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I have been dealing with Complex Regional Pain Syndrome(CRPS) for more then four years now. I was injured in a minor accident at work when my hand got caught in a faulty door. Long story made short, I had to wait a long time for surgery due to workers comp bullshit and had several associated complications. The CRPS has spread from my hand into the rest of my dominant arm and the side of my face. I am no longer able to perform the functions of my job as an ATC and have been reduced to a glorified receptionist. My questions: 1) Does anyone else have experience with this or a similar issue(e.g. Fibro, RSD, TOS, CRPS)? 2) Does anyone else have any releif from a spinal cord stimulator>? 3) Has anyone found any relief from a specific medication or exercises? 4) Does anyone else deal with bouts of frustration or depression over the whole ordeal? 5) Does anyone have any life hacks that make things easier?
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Apr 21, 2014 00:24
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I was diagnosed with myofascial pain syndrome about six years ago, and on top of that it turns out I have a genetic defect where both ulna in my arms are a bit too short which causes extra stress on my wrists and hands in general. All of this sort of spiraled downhill from never being "well" as a teen, and then later in my early 20's while working as a dog groomer I managed to herniate two discs in my back, and that was the the beginning of the end of my ability to do just about anything that required long periods of standing or lifting. I see a specialized doctor - here in North Carolina I guess regular doctors aren't allowed to prescribe any kind of pain management medication. Frankly, I hate my doctor but as I had to sign a pain contract to even get 'in the door' to be seen, I can't even try to get a second opinion because that would be considered breaking part of my pain contract (not seeing more than one physician for this condition at the same time). I waited for almost two years on a waiting list just to get in at this doctor. He refuses to address any specific complaints I have (lately I've had so much trouble with my back and hip that I literally can barely limp along) and will only prescribe narcotic pain killers. In the past I've inquired about other things like Lyrica - fibro is a very close cousin to MPS - and I just get a hostile response. My last appointment, however, he did change my medication. Previously I was taking hydrocodone/acetaminophen 10-325mg 3x a day. Now I'm taking morpheme 15mg 3x. The worst part is it just doesn't give me relief from the pain I'm having, which he won't even hear about. Sorry for the rant. I think this might actually be the first time I've ever posted on SA about my diagnosis.  To answer your question though, I feel eternally frustrated and quite depressed and hopeless about the whole situation.
That Damn Satyr fucked around with this message at 17:04 on Apr 21, 2014 |
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Apr 21, 2014 05:11
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One of the most frustrating things is how few success stories there are. I suffer from a herniated disc with a pinched sciatic nerve. I guess that's not such a big deal compared to the above stated, but there are times where it will knock me on my rear end for weeks on end. I'll feel like a 70 year old man and have difficulty just moving around. I get mixed responses from doctors. Some tell me that it is just pain, suck it up, my back is as strong as it ever was. Others tell me I should adopt major changes to my lifestyle to avoid aggravating it. I have spent drat near the last decade trying to identify patterns to figure out what triggers the symptoms and I've had zero luck. To put this into perspective, I am an active and physically fit person. For the last couple months I have spent my weekends doing motocross and downhill mountain biking. About a month ago, it was pretty rough, I had trouble getting my legs up so I had do have a friend hold my bike so I could get on and off, I could walk, but couldn't run. Now with no change in my leisure activities, and lots of heavy lifting at work it is actually better, I just get little electric shocks when I walk. The most obvious and logical response people have is that I put too much strain on myself, but let's rewind to January and February. I did not touch a motorcycle, snowboard or mountain bike the whole time. Work was slow, and I was more or less getting paid to sit on my rear end and browse Reddit. During that time, I couldn't stand up straight, I had shooting electric pain in my leg whenever I tried to walk, hurt to sit, hurt to stand, hurt even more to lay down. I've tried everything. NSAIDs, chiropractic, weed, yoga, stupid stretches my doctor told me to do. Anything I try either doesn't work, or "sort of works" in a way that's probably just my imagination. Symptoms just seem to come and go at random intervals with varying duration and intensity, regardless of what I do. If anybody out there has suffered a similar condish, I'd like to hear your story. If you have any suggestions, I'm all ears. WildWanderer fucked around with this message at 12:35 on Apr 21, 2014 |
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Apr 21, 2014 12:32
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WildWanderer posted:I suffer from a herniated disc with a pinched sciatic nerve. Has your doctor tried spinal steroid injections? I've had them done three times - the first time I didn't feel that they worked, but the second and third time they did give me quite a bit of relief. As I understand it, it's basically a cortisone-type of thing that they inject directly into the disc in question so it calms down. It sounds awful but it actually doesn't hurt at all beyond the very mild prick of the first needle with the numbing solution in it.
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Apr 21, 2014 17:07
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I currently have a spinal cord simulator implanted in my C7 vertebrae, which really does help a lot. It turns the constant tormenting burning pain is mostly hidden by an electric pulse. Between the simulator and the medication regime(Lyrica/Ultram) about 50-70% of the burning is managed. Every doctor I've seen tells me that the only way to "break the cycle" is to use my arm as much as I can. They have obviously never suffered from anything like this. Has anyone tried any holistic remedies that worked or mirror therapy.
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Apr 21, 2014 22:45
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I hope it isn't too late to reply to this. I have CRPS, and there's another goon with it too. There have been some previous threads on this in the archives, and there's one in E/N at the moment, actually. I've had CRPS for 13 years now, and I've been through the ringer with treatments. I'm glad to hear your spinal stimulator and Lyrica are working for you - I've tried both and neither helped, but I have a pretty resistant case that doesn't respond well to a lot of treatments. I've done mirror therapy, since you asked about that, and I'm really excited at the idea of being able to retrain your brain away from the pain feedback pathways that have developed. Unfortunately, I've only seen a little progress with it myself after quite a few years now, but I have complicating factors. But don't assume my experience is going to be what yours is - it's a wonderful sign you've already found things that are reducing your pain by that much. If you ever want to chat, feel free to PM me, or post back here. I also have an AIM I use to chat with the other goon with CRPS, so if you're at all interested, I can give that out. I'm starting to do some advocacy work, and if there's any advice I can give, or support I can offer, I will. CRPS is a horrible disease, and can be very isolating.
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May 2, 2014 16:23
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I had a spinal tumor which resulted in a fusion from L2-S1, the lost of my right L3 and L4 periphery nerves, and a bunch of other related issues, including severe nerve damage down my right leg and hip. I've basically had non-stop nerve pain for the last five years, which ranges from tingling a majority of the time to wanting to claw your skin off. I also have the normal issues with just dealing with a spinal fusion/bad back and moving around on an extremely weak leg. My pain isn't on the level of CRPS, but I figure more information never hurt (specially for the poster with sciatica), so here are the things I've found over the last few years that help. I also want to note that these are all things I do to manage pain long term. No matter how well I keep to the stuff I list below, there are always bad days and its very hard to predict when they will occur. 1. Sleep: Just general muscle and body fatigue is a huge component in making my pain worse, and a healthy sleep schedule is the single best way I stay in front of my pain and keep it managed. Before my surgery I was realistically fine averaging 6.5 hours a night or so, which included 4-5 hours once or twice a week. Now, though, if I'm not routinely getting at least seven hours of sleep (preferably 8 hours), I pay for it, and it takes more than one night of decent sleep to get back on track. I got in the habit of saying to myself "nothing I'm doing right now is worth a week of pain" whenever I catch myself wanting to stay up late for no good reason. I still have a life and am willing to go out late with friends or for special occasions, but staying up past midnight just loving around online is my body's worst enemy. 2. Exercise: there isn't much to say, but whenever I stop exercising regularly the pain is much harder to control and seems to come on much more commonly. On top of it, trying to start exercising after prolonged absence also increases the daily pain since my body is worn out and more taxed than normal. It doesn't have to be rear end-kicking workouts either - even just walking a mile or two a day is enough to help keep things in check. Since regular exercise also helps keep a healthy sleep schedule, a little can really go a long way. 3. Chairs/beds/etc.: This isn't normal "get a good bed and chair, sit right, etc." sort of thing - that is a given. This is more of coming to accept that I just can't do some beds and chairs. It means I might not spend the night with friends or family if they don't have a good bed for me to sleep on. It means that I sometimes avoid going to places that I normally enjoy because I know that a few hours in a stadium seat will kill me for a week. Cars, restaurants, etc. - it's just something I'm conscious about now, and if need be I can tell people that I need to sit somewhere else or ask to trade seats with someone, etc. I was extremely nervous and embarrassed about bringing those sort of things up for a couple of years, but at this point I've realized everyone understands when you are up front about it and its far more fun to be able to hang out for a long time than have to leave after a couple of hours because you are in pain. 4. Learning your triggers and getting ahead of them: By and large I don't take a lot of medication, for multiple reasons. However, I've got to the point where I can sort of tell that my body might be "primed" for a pain outbreak (for lack of a better term). Extreme weather changes are an example (hot to cold to hot in a matter of a few days). Daytime drinking (or any other condition that brings on dehydration) is another. In those times, the second I feel anything coming on, I'm taking something, even something mild, to try to stop the pain before it gets bad. It's always easier to maintain pain at a constant level than it is to reduce it, so I just try to catch and maintain it as quickly as I can. Coupled with this, I try to always have access to something in case the pain sets in, which means keeping some meds at work and in my car, and taking them anywhere we go for an extended time. I've saved many an outings because I was able to take something quickly at the beach rather than have to go home miserable. This all probably sounds like basic common sense stuff, and I know my pain is mild compared to a lot of other people posting in this thread, but really nothing has worked as well for me long term as just trying to maintain daily healthy habits and just being conscious about planning around unavoidable breaks in those habits. Voodoofly fucked around with this message at 19:26 on May 2, 2014 |
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May 2, 2014 19:23
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My mother has chronic pain from an accident she had almost a decade ago. I forget the exact term for it, but basically she "stretched" the nerves in her shoulder to the point where they fire pain signals on a constant basis. She's had over a dozen surgeries, including total shoulder replacement, removal of muscles, shoulder fusion, and other really intense and serious things that have done almost nothing to remove the pain. As far as relief goes, her biggest source is, honestly, pot. She has extremely heavy duty morphine based medications that she takes when things get very bad, but those leave her logey, spacey, and essentially unable to function very well throughout the day. Pot helps settle the pain down to manageable levels, and also keeps her mind clear enough to do day to day tasks and hold conversations with people. The longer it goes on the more she declines though, and it's terrible to watch, but there's just not much more that can be done. She's on anti depression medications, which helps a little with the depression, but the best way of dealing with frustration is lots of communication with friends and family members. Her disability isn't immediately apparent, aside from a shoulder that slumps a little low there's no way to tell at a glance that she's impaired, so being honest with people about what she can and can't do has curbed a lot of that. She was in denial for a few years about being handicapped, and insisted that she could lift stuff, or be out for many hours without needing to rest, or do this or that just like before, and when she couldn't she would get very upset. Once she was honest with herself about her limitations, and willing to accept and even ask for our help, that settled that down. We also make sure to plan activities around what mom can do, and to make provisions and outs in case she's having a bad pain day and can't leave the house. It's up to us, her family, to accept that plans won't always work out, and to not make it seem like "Uuuuugh mom hosed up the vacation" when things happen. Life hacks involve finding a doctor who a) specializes in chronic pain, b) will LISTEN to you, and c) is willing to work with any other doctors you might have. Mom has a pain guy and an orthopaedic guy and makes sure that any changes suggested by one and cleared with the other. Before she got a specialized pain guy the responses from doctors all basically boiled down to "wow, that sucks" and that's about it. Her pain doctor is a great guy and is always willing to listen to her if the pain changes in intensity or sensation (like, I guess sometimes it's a burning feeling, sometimes it aches, sometimes it's stabbing), and he doesn't just jump right to "More/stronger drugs for you lady!" but is willing to actually help her figure out what's going on and if anything can be done that doesn't involve lots of drugs she doesn't really want.
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May 2, 2014 21:11
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I've had 2 herniated discs, L4-L5 and L5-S1 for the last 8 years. I'm 28. It started as just some minor aches and pains that's just kept escalating. The worst part for me wasn't the pain itself, it was the fact that it was constantly there. After 6 years of constant 24/7 pain I tried to off myself. If I owned a gun I'd probably be dead right now. It started with ever increasing doses of Tylenol and Motrin, then the next 4 years on Ultram. One day I was on the set of a pilot we were in the process of shooting and I dropped having a seizure. I'm not epileptic or anything it's just a side effect of Ultram. On the worst days I'm hunched around like an old lady. The best days I'm not irritable to the point of angry. I've run through the whole gauntlet of spinal treatments. Steroid injections, Facet blocks, trigger points, TENS units, god knows how many different meds. At its worst I was on 120mg a day of Oxycontin. Right now my doctor and I are scaling it back. Currently I'm on 3x Oxycontin 30mg daily, 3x 5mg Valium, and 2x Flexiril, and I'll be dropping to 20mg Oxy in 2 weeks.
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May 2, 2014 23:17
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It's pretty awful. I have Ehlers-Danlos Syndrome (Hypermobility Type). One of the major diagnostic criteria is widespread severe joint pain, and one of the symptoms is hypersensitivity to nociceptive stimuli, which includes pain. The pain started when I was 19, and I'm 33 now. Currently I use Neurontin 600mg 3x daily, and occasionally Tylenol to help control it. On days when I wake up with something out of socket, or accidentally injure myself, I usually hit up the urgent care place and get a shot of Toradol and hope I get the doctor there that knows EDS and is willing to give me some Vicodin. A few years ago I was on 30mg morphine instant release 3x daily, and 5mg instant release Oxycontin for breakthrough pain. I suggest getting a therapist to talk to, or better yet a psychologist who specializes in pain management. Pain wears you down, and eventually you become a grumpywumpus. Trained professionals and good friends are the best way to combat that. A healthy social network to give support is, in my opinion, one of the best ways to combat chronic pain. Also, try doing whatever you have to to get a good night's sleep as often as possible. Pain can and will gently caress up your sleep, and not sleeping well will wear you down making it easier to be susceptible to the baggage that comes with chronic pain.
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May 28, 2014 13:24
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I do have a hell of a time sleeping. I tend to keep myself awake until late so that when I do climb into bed I'm so tired that I sleep soundly. Ive tried a dozen different medication routines and they all have downsides. I have found that physical work, though very painful, can be enough of a distraction that it can actually help ease my mind in the long run.
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May 28, 2014 15:59
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Desert Bus posted:Also, try doing whatever you have to to get a good night's sleep as often as possible. Pain can and will gently caress up your sleep, and not sleeping well will wear you down making it easier to be susceptible to the baggage that comes with chronic pain. This is the best advice, a million times over. I keep a bottle of Tizanidine in the nightstand for nights when the pain is too much for my normal regiment of meds to handle. The muscle relaxer does nothing to combat the pain, but I know if I take a full pill I'll be knocked out for at least four hours. It's lovely, but you end up finding these 'nuclear options' to get through the pain. :/
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May 28, 2014 17:38
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That drat Satyr posted:This is the best advice, a million times over. I keep a bottle of Tizanidine in the nightstand for nights when the pain is too much for my normal regiment of meds to handle. The muscle relaxer does nothing to combat the pain, but I know if I take a full pill I'll be knocked out for at least four hours. I've been through pretty much every med that's meant to make you sleep. The only ones that work for me are benzodiazepines. 5mg of Valium at night, and I sleep 8 hours, but not deeply enough that I usually wake up if I dislocate or hyper-extend something.
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May 28, 2014 17:52
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What the hell. 1) Does anyone else have experience with this or a similar issue(e.g. Fibro, RSD, TOS, CRPS)? I have fibromyalgia, some vague loose-but-not-really-hypermobile joint thing, sacroiliitis, endometriosis, migraines, IBS, and probably some related something I'm leaving out somewhere. They almost all effect each other, and it sucks major balls. 3) Has anyone found any relief from a specific medication or exercises? Exercises, eh. Not yet, though just walking and moving around does help in general. I take cymbalta 60mg. I tried lyrica, gained a shitton of weight instantly, so yeah, no idea if that would have worked out. Imitrex as needed for migraines, ultram for pain, hydrocodone for really bad pain very rarely, and fiorinal for headaches. Flexiril is great for muscle relaxing. Bengay helps me too. Xanax gave me night terrors. 4) Does anyone else deal with bouts of frustration or depression over the whole ordeal? Yes, all the time, constantly. I can't really help much there. I am starting therapy again soon, hopefully it helps. 5) Does anyone have any life hacks that make things easier? Don't feel bad about using a cane, walker, wheelchair, scooter, or whatever you need. People might give you dirty looks in a store for being young or standing up to get to a high shelf. gently caress 'em. I have an awesome walker with a seat. It's great for walking around a mall or something. Don't have to carry poo poo, and can sit and rest. I don't know about your specific hand thing, but compression gloves can be awesome. I wear fingerless ones whenever my fingers get chilly. Which is like, always.
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May 29, 2014 06:59
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Mr Rhodes posted:I have been dealing with Complex Regional Pain Syndrome(CRPS) for more then four years now. I was injured in a minor accident at work when my hand got caught in a faulty door. Long story made short, I had to wait a long time for surgery due to workers comp bullshit and had several associated complications. The CRPS has spread from my hand into the rest of my dominant arm and the side of my face. I am no longer able to perform the functions of my job as an ATC and have been reduced to a glorified receptionist. 1) - I have Ankylosing Spondylitis - Causes severe bouts of pain in lower back and sciatica as well as attacks my eye and gives me Iritis - pain and swelling in the eye and exposure to bright light 2) - I have not tried that. 3) - Took me 12 years to find a medication that works currently on Anti TNF medication that helps lower my immune system and stop it from responding and attacking my back, eye etc.. these enable me to do exercise of which I have found YIN YOGA to be the best for injuries due to its slow nature and pillow support. Any fast paced stuff is not for me. 4) Just before i got this new medication - the train tracks were looking fking mighty appealing and I kept thinking if I was a horse I would have been shot by now. Often turn on those around me too just cannot help it sometimes I just think why are you putting up with this. But then they just remind me I am an rear end and life goes on. Never stop giving up the future is a wonderful thing. 5) Life Hacks are - do what it takes to make you feel right , do not worry about your job , do not worry about the kids , do not worry about the bills mortgage or how you feel sorry for yourself. CHANGE everything possible to accommodate the new you and the rest will follow. It will be as scary as fk but by doing this and getting yourself into a better head space all the other things will follow.
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May 30, 2014 14:56
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Mr Rhodes posted:1) Does anyone else have experience with this or a similar issue(e.g. Fibro, RSD, TOS, CRPS)? 1. While my pain definitely isn't as severe as the other people who have replied, I have something wrong that causes recurrent hip bursitis and pain from my neck to my knees, along with some other things. It's an ongoing mystery that is trying to be solved, but guesses from my doc and PT have ranged from Lupus to hip labral tears. I've also had a few meniscus tears in my knees from stupid stuff like walking down a hill. 2. No experience on that, but I've heard really good things about mirror therapy. See #3. 3. Physical therapy! PT can do wonderful things, and maybe you could get hooked up with someone who does mirror therapy. I go to PT for the hip stuff and it definitely helps. Also, I sprained my neck and had shooting pains down my arm related to a work injury, and PT cleared that up completely. Since it's been so long since your initial injury, getting worker's comp to cover PT might be difficult, but it was covered for me. If you've never had PT it's worth a shot, apply for comp coverage again, the worst thing they can do is turn it down (but go anyway). They also got me a SI belt that helps. I go to the gym when I can and do elliptical and weights which helps. I've also had cortisone injections in my hips but they haven't really done anything, it wears off in a matter of days. As far as meds, NSAIDS most of the time, and when it gets really painful, Lortab. 4. My main issue is that nobody knows what is causing this. I'm only 25, I shouldn't feel the way I do. On days where it's really painful and I don't feel like doing anything I get pretty frustrated. I just want to know what's wrong, I don't care if it's bad news, at least I will know. Some days I wonder if I am just a huge baby and it really isn't that bad and I have a low pain tolerance or something. When I'm asked to rate my pain and I say "It can get as bad as an 8," that's when I feel the most pathetic. 5. Stay active. It's ok to have days where it's too painful to do anything but you should stay active more often than not. I have a relative with a terrible back and weed helps them tremendously. If you haven't been to a pain specialist, see if you can get a referral.
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May 31, 2014 23:52
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I just want to start off by saying it is really comforting to read about other people going through the same thing. I was in a 65 mph rollover accident a year and a half ago, and I have some (permanent?) nerve damage in my back. The orthopedist said I had stretched nerves in my back and hips, and that I may or may not recover from it. Basically, I can't hold any one position for very long without deep, intense pain (I have trouble even going to the movies--it's funny how the little things get to you), my legs/feet go numb intermittently, and I have shooting pains when I twist at all. I also have a couple of extremely tender to the touch spots on my hips/lower back. I don't have great insurance (high deductible), so I haven't been able to try everything as far as treatments go. I have tried chiropractors, PT, yoga, massage and a variety of painkillers. I really do wish I had a definitive diagnosis, as though labeling it would somehow help. Marijuana has actually been the best treatment thus far. It takes the edge off and lets me sit/stand for longer than 20 minutes, although the pain never goes away completely. The only downside is I don't like to use it if I'm going to be driving, and the stigma that goes along with weed use. I do get frustrated sometimes, and I really feel bad about inflicting it on my significant other. He has been really great about it. He does the dishes now because that slightly bent-over position that goes along with doing dishes is really awful for me. I suppose I get depressed too. Part of what gets me though is that friends will forget that I have a problem because it really isn't obvious, and I hate to have to bring it up, and tell them that no, I can't do X thing. It feels like complaining and it is embarrassing. I hate always having to plan things around my pain. I can't even sit at a table for a nice long meal. Wow, sorry to be so negative. It feels really great to talk about it though; I feel like no one really understands.
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Jun 1, 2014 11:08
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soap. posted:I just want to start off by saying it is really comforting to read about other people going through the same thing. A pox on all cinema seats lol. I have literally bought a movie ticket then gone inside and sat down for about 2 seconds before going back and asking for a refund because there was no way I was sitting for 2 hours there (it was a new cinema). Also a pox on modern minimalist furniture tables and chairs  . If this is long term. Learn what works for you and try not to fight to much with your old self with things you think you should be able to do. Learning movement over again sucks but it can be done. As for labeling it helped me I suppose , although I argued with the label for another 5 years in denial and only the last couple of years I tried to embrace it. I have just accepted another full time job and I am now realizing that I will probably have to go back to part - time - just to keep up with my extra mural stretching and health regime. hang in there
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Jun 1, 2014 22:51
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HUGE SPACEKABLOOIE posted:I've had 2 herniated discs, L4-L5 and L5-S1 for the last 8 years. I'm 28. It started as just some minor aches and pains that's just kept escalating. The worst part for me wasn't the pain itself, it was the fact that it was constantly there. After 6 years of constant 24/7 pain I tried to off myself. If I owned a gun I'd probably be dead right now. I'm 35 and have the same herniated discs/nerve pain. People don't understand that it's not *just* having pain, it's having pain that is never ending. It exhausts you and wears you down mentally. I've been to multiple doctors and had all of the same spinal treatments. The median branch block worked, I was pain-free for about 5 days. That's the last time I was pain free and that was almost 6 years ago. Because it was a workers comp case, I was at the mercy of insurance approval and they only approved it the one time. At the time, I was down to working 24 hours a week (because of the injury) and couldn't afford to get the injections if I had to pay for it myself. TENS units are a godsend. I go through 9 volt batteries like they are nothing. I take an unholy amount of ibuprofen,Tylenol,and naproxen each day. My current doctor is "nice" enough to prescribe tramadol for me...50mg, 3 times a day. After 4 years of being on the same dose, she won't up it or even consider something else. She says I'm too young to be dependent on pain meds and I really shouldn't be in as much pain as I claim I am. It takes 3 or 4 or sometimes 5 tramadol to get my pain into the "I can carry on a conversation without growling and/or screaming at people" level. Since I have to take multiple, I run out of my pills halfway through the month and then my life turns into a living hell again. My doctor also prescribed Flexeril, which does absolutely jack poo poo to alleviate anything other than my level of consciousness. I save that for nights when even laying down brings me to tears. There is a pain clinic at a local hospital but they only accept patients through referral. My doctor won't give me the referral because it's not through her choice hospital. So I've doctor shopped. Most docs at that hospital aren't accepting new Medicaid patients, but if I can pay cash they are willing to see me. I support myself and 2 children off of $10/hour, so I can't afford it. Former friends avoid me because of my pain-related mood swings. The same ones who pop Norco/Dilaudid/Oxy recreationally. It makes me want to bang my head on some railroad tracks while a train is speeding over them. If someone told me "There is a pill that will drop your pain level considerably enough to make you function normally but every pill would take 3 years off of your life", I'd beat them and steal the pills. The depression that pain brings, the isolation, the anxiety of going places because it hurts to much to move and the potential humiliation of crying in public because of the pain means I go to work and come home and that's about it. I passed nursing school with a 4.0 GPA but never took my boards because I knew that I'd never be able to handle the job (I'm a CNA who got moved to medical records because of the injury). Ugh! Edit: Everybody I know has suggested marijuana use to help. The problem with that is, every time a "random" drug test comes up at work, my name somehow manages to get called. I'm desperately afraid of coming up dirty and getting fired, because I know how hard it will be to find another job that I can halfway handle. Absolute Evil fucked around with this message at 01:28 on Jun 2, 2014 |
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Jun 2, 2014 01:26
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brakanjan posted:A pox on all cinema seats lol. I have literally bought a movie ticket then gone inside and sat down for about 2 seconds before going back and asking for a refund because there was no way I was sitting for 2 hours there (it was a new cinema). Also a pox on modern minimalist furniture tables and chairs Thanks for this. It's hard to accept that this is my new body, with all it's limitations! Absolute Evil posted:I'm 35 and have the same herniated discs/nerve pain. People don't understand that it's not *just* having pain, it's having pain that is never ending. It exhausts you and wears you down mentally. This is really true as well. After the accident I went to part time because even that would wipe me out entirely. I had the intention of going back to full-time, but I haven't gotten to that point yet. As for the marijuana, that is so rough. I'm lucky that I both live in a state where it's legal (medicinally) and that my employer doesn't drug test. If you are in a marijuana legal state, maybe talk to HR and see if there could be an exemption for prescribed use?
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Jun 2, 2014 06:12
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In the end I suppose we all try to fight the process. I had to laugh today when my old man texted me that he finally had come to terms with losing his bottom teeth (he is 70) and put it down to old age. So even he is still coming to terms with growing old at 70. I though perhaps it is not to bad I got used to grannies speeding past me at 27. I suppose all comparison is relative to what is surrounding you at present. Nothing is really fixed then is it - in the great scheme of things all things are subject to change I also cannot smoke weed due to work. Although when I did years ago it never really helped the pain it just helped me get through it.
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Jun 2, 2014 14:20
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WildWanderer posted:If anybody out there has suffered a similar condish, I'd like to hear your story. If you have any suggestions, I'm all ears. They work out all the same muscles that you would if you were running without straining your spines shock absorbers. It really loosens and strengthens all the ins and outs of your glutes/ lower back. I felt better but still somewhat weak after this so I started looking for something else. I first settled on squatting everywhere rather than sitting, because i could feel my lower back getting stressed from sitting. this helped me gain back some lost mobility in my hips, but it was damaging to my knees. Eventually I settled on standing all day with a stand up desk for computer use. After doing this for about six months I gained a normal sensation when running which was the first time I have since I was injured. I still have serious flexibility problems (can't do situps) but all in all I feel normal. I truly believe that the root of my lower back success was eliminating sitting from my life.
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Jun 6, 2014 06:03
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EA Sports posted:After about 4 years, I stopped getting sciatica and only ever experienced weakness and numbness. I started exercising on an elliptical every day for about a year. What is an elliptical and have you tried other chairs - I found a combination of sitting or standing helped but either one held rigid for a long period of time made it worse.
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Jun 6, 2014 18:10
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brakanjan posted:What is an elliptical and have you tried other chairs - I found a combination of sitting or standing helped but either one held rigid for a long period of time made it worse. https://www.youtube.com/watch?v=kMRQmijCc5Y If I tried standing all day before I worked on on that elliptical or anytime before that, I would find standing all day unbearable. Literally everytime I sit though I can feel a slight pull of stress in my lumbar area so I avoid it whenever I can.
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Jun 6, 2014 18:45
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Absolute Evil posted:Radiculopathy Though I don't recall the thread, somehow I remember hearing your story before I agree with your primary doctor that referral to pain management is not appropriate at this time. I would not escalate opioids as they are the worst thing you can do for chronic neuropathic pain, as a general rule. My approach would be to try to taper off the Tramadol, which should not be used on a daily basis. Realizing this is not possible in your current situation, you need something that targets the neuropathic pain. Have you tried gabapentin? If not, I would highly recommend it. If you had tried it and it failed, I'd be curious as to what dose you reached. Many people are started by their primary doctor at 300mg three times a day and hate it when it makes them feel terrible, and hate it even more when it doesn't work. The minimum effective dose (per trial data) is ~400mg three times daily and I have patients who take 1200mg or more three times a day. An additional agent to consider would be a tricyclic antidepressant; the two commonly used for neuropathic pain are nortriptyline and amitriptyline. Naprosyn, Tylenol and Motrin are all great stuff though you ought not to take both Motrin and Naprosyn together as they are of the same class. At times I do recommend taking more than the recommended amount of naprosyn (600mg max OTC, but up to 1000 or even 1500mg by "prescription") so if you find it to be more helpful (which I do) I would stick with that one. You can "get away" with taking high doses of anti-inflammatories by taking something to protect your stomach - pepcid or a proton pump inhibitor (lansoprazole, omeprazole are both over the counter)
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Jun 7, 2014 00:08
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Low Carb Bread posted:
As for the ami/nortriptyline, I was on wellbutrin 400mg bid and my doctor said she wasn't comfortable having me on both at the same time. I'd tried almost every anti-depressant under the sun and wellbutrin was the only one that helped, while having the fewest negative side effects. She didn't say what interaction could happen and now that I look it up, I'm not seeing anything.
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Jun 7, 2014 01:34
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You guys are so lucky to have pain clinic doctors that actually treat you like real people and not just another cash cow. My most recent appointment went a little something like this: I go in, the very first thing through the door is I get to pee in a cup for ~mandatory drug testing~... Then am taken back. The Dr. Come in and makes a little small talk with my husband (incidentally about how OBAMERCARE GONNA PUT HIM OUTTER BUSINESS) So then, my visit. I've been seeing this doctor for FOUR YEARS and only once, at my very first visit, did he examine any part of my body at all. We sit and he reviews my paper and notices I'd marked on my intake papers that I had a specific issue today - I usually do. And it's the same 2-3 major issues (hands/wrists/forearms, lower spine, and right shoulder) In all of the time I have brought these concerns to him, they're ignored or blamed on other things. But I digress. To my appointment. (Dr.)  How're you doing?(Me) Not so well. I've been having this pain in my arm where the whole side of my hand like... Spasms or something and then all my fingers go numb and draw up into a crab claw -makes hand gesture- It's very painful and is now happening g so frequently that hours of my day are spent doing nothing but holding heat or ice on my hands, both of which seem to help but only a little. :Well the government says I gave to tell you that you're over weight. The key to living with no pain is to lose weight. So... What should I do about my hands? If it hurts to do something, don't do it. If they start hurting, stop whatever you were doing and don't do it again. Then he leaves the room and the nurse returns with exit discharge papers and my med refills. This is how all appointments here go - and when the itemized bill comes in from my insurance I just can't figure how ol' 'Bamer is running him dry when he can somehow justify charging $946 for pissing in a cup and putting a dip stick in it. The paper print out I get at the end of my visit says my actual diagnosis is Myofascial pain syndrome, a close cousin to Fibro. He is currently treating me with the following: Morpheme 15mg 3x day Celebrex 200mg 1x day Tizanidine 4mg/day or pen I feel like nothing I'm on really works to contain and stop the pain, only dull it and make me so loopy that I don't care or something. On top of all this other bullshittery, the past few times I've gone, as he walks out he says poo poo like, "This is not a long term solution". WELL SHITBAG HOW ABOUT YOU EXAMINE ME WHEN IM IN YOUR OFFICE SO YOU HAVE AN IDEA ABOUT WHAT MAY BE THE SOURCE OF MY PAIN and maybe THEN we can use a treatment meant for whatever it is that makes my entire body feel like my muscle fiber is going to shred apart at any moment. e: fixed autocorrect blurp That Damn Satyr fucked around with this message at 22:39 on Jun 8, 2014 |
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Jun 8, 2014 07:40
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That drat Satyr posted:You guys are so lucky to have pain clinic doctors that actually treat you like real people and not just another cash cow. My most recent appointment went a little something like this: You ever thought of getting another doctor. I do not know how hard that is to do in your situation. But If I am paying for them now I literally walk in and ask them all the questions I need to written down on a piece of paper. If they try and end early and I am not satisfied I will tell them I exactly what I am paying them for. If they do not like it - I leave. Saves me more in the long run until I find someone who knows what they are talking about. After 12 years of misdiagnosis I do not take to kindly to people who cannot admit they do not know. I once read an article about this guy doing a study on risk management - especially important after the economic collapse in 2008 - he wanted to find out who had the best way of dealing with risk and wanted to apply it somehow to the investment sector. Anyway, he went to professional gamblers (and I mean pros not ones who remember their winning moments but ones that only look at their losses and analyze how to avoid, prevent or minimize it) he went to lawyers , bankers and a whole heap of professions that involved high risk factors. So he devised this test to test risk and when it came to testing doctors he found that they had one of the worst risk maintenance scores ever - he was surprised by this as he thought here are these guys everyday they have to make a vital decision on many patients all day - so he thought they would be good at it. But he found that they to positive they try to treat something as soon as they come accross it and most have to believe they can help or can cure or fix someone. They failed when it came to cold hard diagnosis and because, unlike the pro gambler, they remembered the positives and did not over analyze the negatives and perhaps realize they could not treat this from day one and refer or suggest alternatives --very little scored high that way. Anyway I remember that now when I deal with them.
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Jun 8, 2014 20:59
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brakanjan posted:You ever thought of getting another doctor. I do not know how hard that is to do in your situation. But If I am paying for them now I literally walk in and ask them all the questions I need to written down on a piece of paper. If they try and end early and I am not satisfied I will tell them I exactly what I am paying them for. If they do not like it - I leave. Saves me more in the long run until I find someone who knows what they are talking about. After 12 years of misdiagnosis I do not take to kindly to people who cannot admit they do not know. I once read an article about this guy doing a study on risk management - especially important after the economic collapse in 2008 - he wanted to find out who had the best way of dealing with risk and wanted to apply it somehow to the investment sector. Anyway, he went to professional gamblers (and I mean pros not ones who remember their winning moments but ones that only look at their losses and analyze how to avoid, prevent or minimize it) he went to lawyers , bankers and a whole heap of professions that involved high risk factors. So he devised this test to test risk and when it came to testing doctors he found that they had one of the worst risk maintenance scores ever - he was surprised by this as he thought here are these guys everyday they have to make a vital decision on many patients all day - so he thought they would be good at it. But he found that they to positive they try to treat something as soon as they come accross it and most have to believe they can help or can cure or fix someone. They failed when it came to cold hard diagnosis and because, unlike the pro gambler, they remembered the positives and did not over analyze the negatives and perhaps realize they could not treat this from day one and refer or suggest alternatives --very little scored high that way. Anyway I remember that now when I deal with them. The big issue is that in North Carolina there's a sort of network thing that tracks all of your doctor.. stuff(?), and I've signed a pain contract with the current doctor I have, and by even going to a different doctor just for a simple second opinion and not seeking any medication at all it's a breach of the pain contract I was essentially forced to sign with this current doctor to receive any treatment at all. Beyond that, I've been found disabled because of the issues I have and therefore have Medicaid and Medicare, and finding doctors around here that take it is a whole circus on it's own. As well, far as seeking a different doctor, I would have to get this one to 'release' me from the contract, or sneak behind his back and potentially get caught 'going behind his back' per se and possibly get put on whatever doctor blacklist bullshit they have statewide to keep people from doctor shopping. I'm sorry for the huge vent post last night. This poo poo just gets to me really bad sometimes. :/ That Damn Satyr fucked around with this message at 22:41 on Jun 8, 2014 |
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Jun 8, 2014 22:37
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That drat Satyr posted:
Ha ha ha ha ha ha no. quote:
That's super awesome when the thing is "use a knife and fork" or "brush your teeth"! I hate your doctor on your behalf.
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Jun 9, 2014 00:12
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That drat Satyr posted:The big issue is that in North Carolina there's a sort of network thing that tracks all of your doctor.. stuff(?), and I've signed a pain contract with the current doctor I have, and by even going to a different doctor just for a simple second opinion and not seeking any medication at all it's a breach of the pain contract I was essentially forced to sign with this current doctor to receive any treatment at all. Beyond that, I've been found disabled because of the issues I have and therefore have Medicaid and Medicare, and finding doctors around here that take it is a whole circus on it's own. As well, far as seeking a different doctor, I would have to get this one to 'release' me from the contract, or sneak behind his back and potentially get caught 'going behind his back' per se and possibly get put on whatever doctor blacklist bullshit they have statewide to keep people from doctor shopping. That is the most fked up poo poo I have ever heard a pain contract with a doctor. OMF. Really sure Hippocrates rolling in his grave. Just WOW. I swear only in America. You know a few years ago I was going to emigrate there and then I heard horror stories about the labor law but that ......sheesh... dodged a bullet there and they call my country 3rd world. brakanjan fucked around with this message at 23:32 on Jun 9, 2014 |
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Jun 9, 2014 23:29
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brakanjan posted:That is the most fked up poo poo I have ever heard a pain contract with a doctor. OMF. Really sure Hippocrates rolling in his grave. Just WOW. I swear only in America. Unfortunately in the US pain contracts are par for the course in most places. Some of the stuff that was on the one I had to sign was, for example, that I agree to not mis-use my medication by taking more of it than prescribed, not give it to anyone else, and so on which is basic sense, but also things like that I will only use one pharmacy, the one I have declared to this doctor that I use, that I will use no other painkillers prescribed by no other doctor and if something happens and I need to take meds from another doctor I have to call them ASAP and report it. IE: I had surgery and was put on some other heavy painkiller and I had to save all the bottles and take them with me to my next visit, even though they were all empty. Every visit I go to, I have to take my bottles that I've filled since the previous visit and they count all my meds and track it. I also, as mentioned, get a drug test every single time because god forbid marijuana might help relieve some of this pain. It's really a whole pile of bullshit... but there's not much else I can do right now but bitch about it on the internet, so... here we are.
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Jun 10, 2014 01:04
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That drat Satyr posted:
No worries bitch away, I am surprised you are so patient. I have little to no patience for medical systems that fail me. I heard an old story about how Chinese acupuncturists would get their weight in gold if they cured the emperor or they would die. I think about this now and again when I find a bad doc.
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Jun 10, 2014 01:08
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brakanjan posted:That is the most fked up poo poo I have ever heard a pain contract with a doctor. OMF. Really sure Hippocrates rolling in his grave. Just WOW. I swear only in America. In an ideal world a pain contract allows for a structured program. The alternative in some cases is the unscrupulous prescribing of opioids with profit as the primary incentive. I have yet to sign such an agreement as I do not prescribe chronic opioids for the indications they are most typically prescribed (fibromyalgia, back pain) and in these cases I leave it up to the patient whether they would like to seek out a provider who will. In addition to the psychological factor to which you are most likely reacting (treating patients like children, as I have heard alleged), there are other downsides to the contract. Mainly that they are often terminated when drug screens come back positive for marijuana, other opioids etc. However these are the patients who oftentimes are using other drugs because their pain is not adequately being treated, so rather than address that issue the contracting physician cuts them off. Some of the issues that these contracts were trying to address (preventing patients from seeing multiple providers for narcotics) are becoming less relevant, as many states have created, or are working to create narcotic registries so that any provider can see what controlled substance have been prescribed.
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Jun 10, 2014 03:33
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brakanjan posted:That is the most fked up poo poo I have ever heard a pain contract with a doctor. OMF. Really sure Hippocrates rolling in his grave. Just WOW. I swear only in America. Actually, they have them in Canada too. I was quite upset with my doctor for bringing it to me, but he said that first all of the new patients had to sign, and now they were getting all of the old patients to sign it too. While I didn't object to the items in it per se - it was pretty much 'don't abuse the drugs' and 'don't sell them to other people', I felt the entire nature of it was coercive, and especially, one sided. There was no promise to treat me, to ensure my pain relief is adequate or at least work on getting it there, to refer me elsewhere if they felt I couldn't be properly treated with them, anything at all. I would have respected a two-way contract, but not a 'sign this promising to be good or you can't get treated here at all'. Especially after being an old patient who had never shown any signs of problems with regard to taking my medications improperly or sharing them with others. But they said they didn't really have a choice in bringing it to me, and that it was a new regulation. I'm unsure if they meant a new clinic regulation or a new provincial one, but either way, they said I didn't have an option but to sign it. Honestly, I'm not sure that it could stand up to much legal scrutiny. A contract implies two parties offering things to each other, not a one-way deal. I guess you could argue that it's implicitly meant to be 'we'll continue treating you if you sign this', but it was not mentioned in the contract at all. Especially when the patient signing it is in pain, and doesn't really have a choice but to sign, it seems coercive. Then again, there's probably some legal precedent that I'm missing. edit: And then I read things like That drat Satyr posted:Unfortunately in the US pain contracts are par for the course in most places. Some of the stuff that was on the one I had to sign was, for example, that I agree to not mis-use my medication by taking more of it than prescribed, not give it to anyone else, and so on which is basic sense, but also things like that I will only use one pharmacy, the one I have declared to this doctor that I use, that I will use no other painkillers prescribed by no other doctor and if something happens and I need to take meds from another doctor I have to call them ASAP and report it. IE: I had surgery and was put on some other heavy painkiller and I had to save all the bottles and take them with me to my next visit, even though they were all empty. Every visit I go to, I have to take my bottles that I've filled since the previous visit and they count all my meds and track it. I also, as mentioned, get a drug test every single time because god forbid marijuana might help relieve some of this pain. And it's like, oh who the hell cares about my pain contract. Every time I think of something to complain about when it comes to my treatment, I just read something a million times worse from the States. peo fucked around with this message at 12:12 on Jun 10, 2014 |
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Jun 10, 2014 12:08
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1) What the hell, I don't usually like talking about my problems but I will chime in. I've had chronic migraines for 6 years, which aren't migraines they are likely CRPS or chronic cluster headaches but the diagnosis is migraines because insurance covers things with much less questions asked. I haven't had a pain free day in those 6 years and a whole slew of extra neuropathic pains have started but nothing worse than the headaches. I had brain surgery in 2009 because I had a minor chiari malformation, this is when your brain stem is squished in the whole coming out of your skull, and had my C1 vertabrae removed and I think something done to my C2. I got pressured into that surgery by my neurologist at the time who couldn't understand why triptans and Ami/Nortriptalyne wouldn't work for my headaches. After the surgery when I was in more pain then I was in before hand I put myself into a psych ward twice because I was genuinely afraid I was going to kill myself, that was my rock bottom. 2) I haven't had a spinal stimulator but I have had a super-orbital stimulator trial for a week. I can't really go into great depth since again this was that same neurologist pressuring me into things without doing proper research. They put the stimulator on my super-orbital but that wasn't actually where the pain was coming from so I had the thing pulled out of my face. What I learned from this though is that if you are going to get a stimulator make sure you have a pretty good idea that is actually where the pain is coming from. Get a bunch of nerve blocks in the area, maybe try radio frequency, then get the stimulator when the nerve comes back, because a trial is expensive and a trial that doesn't work is only slightly less expensive than getting the thing implanted. I can make a guess and say that if that nerve was the one that actually hurt the thing would have probably worked, the pulsing electrical feeling does some really weird things to pain in the area and while it is a really weird feeling it is better than pain. 3) Gabapentin is the miracle drug for me, while it hasn't gotten rid of my pain it at least makes all the annoying aches and pains I started getting in my limbs a lot less annoying. It is also extremely cheap unlike Lyrica which can be pretty pricey when you get into the high dosages. Weed helps with the non-head pain but unfortunately it can be kind of a pain in the rear end to deal with the issues of legality. Ketamine infusions helped a lot with the pain but they didn't last nearly as long for me as some people have said they do, for me it was maybe a month of lessened pain for every week of infusion so it becomes a time/reward ratio that you have to figure out. Right now Sprix(intranasal toridol) is my emergency breakthrough pain drug and it is a pretty amazing thing. I used to have to go to the ER when my pain hit a certain point because it wouldn't "break" back to a level that was at least tolerable, while the sprix doesn't prevent those desperate ER visits entirely it has dramatically reduced them. Drugs aside I have found yoga and biking to help tremendously with pain. Stretching truly helps with the deep muscle aches I get for no apparent reason. Even if you are stretching and working out parts of your body the pain isn't in you might be surprised with how much better you actually feel after wearing yourself out or just making your body feel like its been used for more than just being in miserable pain. 4) As I said in my first paragraph I was suicidal for a while after my failed surgery and it was as bad as I have ever felt in my life. It didn't help that my anti-depressants were being hosed with like crazy so that I could try amitryptaline. I still deal with lots of bouts of depression where I won't want to get out of bed for days, because I say to myself "what the hell is the point?" Therapy and exercise are the only things that have worked for me in that aspect. It does seem hard to find a therapist that deals with patients with chronic pain who aren't dying from said pain but a lot of the time, but they are out there and it doesn't seem to be that important assuming the therapist is actually good at their job. I found that even though my therapist didn't really "get" what was wrong with me he was still empathetic and helped me deal with the mundane things in my life that added to the frustration and helplessness I was feeling. I think it is very important to try and get yourself to a state where you feel less helpless, even though you are dealing with something completely out of your control. 5) Keep yourself busy with something. It doesn't have to be work, it doesn't have to be productive just make it something. Anything that can momentarily take your mind off the pain is worth doing. If you aren't working make a daily schedule and stick to it regardless of how futile it seems. Right now I am kind of feeling rather hosed since I am seeing a headache specialist and a pain management doctor and neither really know what to do with me. I have had almost every facial nerve blocked with no success and am now about to start spinal nerves, which I am not looking forward to. I have a question: What do you guys do when your pain is a 10 and you can't get it under control? My pain management doctor has me going to the ER but that seems like an absolutely ridiculous solution to this problem. At the ER they give me a truckload of Dilaudid which helps a lot, but it seems like using nuclear weapons to kill a fly. It's also thousands of dollars a visit and that is just not a sustainable solution especially in the summer when my bad days increase tenfold due to changes in the weather. I have been presented with dozens of other emergency medications ranging from headache abortives to high doses of oral opiates but none of them break the pain long enough that my maintenance meds will get it back under control. At the moment I am just taking those days and dosing myself to the gills with valium and pot and hoping that the next day will be better, which it rarely is.
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Jun 11, 2014 18:58
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Locker Room Zubaz posted:
Hydrocodone, flexiril, and willing myself to sleep. Like, straight up curling up, closing my eyes, and forcing myself to sleep through the pain. I think it's a learned skill or something.
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Jun 11, 2014 20:07
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Araenna posted:Hydrocodone, flexiril, and willing myself to sleep. Like, straight up curling up, closing my eyes, and forcing myself to sleep through the pain. I think it's a learned skill or something. And still some people can never get used to their partners snoring.
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Jun 11, 2014 20:48
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Araenna posted:Hydrocodone, flexiril, and willing myself to sleep. Like, straight up curling up, closing my eyes, and forcing myself to sleep through the pain. I think it's a learned skill or something. 6 years of this poo poo and I still have trouble forcing myself to sleep. I was in the hospital for a week at one point on 6mg of klonopin a day and was still wide awake the entire time.
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Jun 11, 2014 22:48
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Locker Room Zubaz posted:
For 11 out of 10 pain I avoid walking near railway tracks. But seriously for 10 out of 10. It is just me time and bear through it. Do something do everything that helps. I play games or scream or curl up in a ball and feel sorry for myself. My pain is not in my head but my whole body so I try to separate myself from it - er meditatively. Painkillers or Drugs work sometimes but they do not really get me through. Have you ever tried LSD for migraines, I am sure I read an article about that but I will need to dust off some old magazines to find it. But yeah when that super pain comes I have learnt not to fight it just to be a reed in the wind.
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Jun 12, 2014 02:02
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