Pain from RSD advise

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patsy123
Regular Member


Date Joined Sep 2009
Total Posts : 41
   Posted 4/17/2011 8:13 AM (GMT -6)   
I've read so many stories from folks on this site with rsd and have learned so much from you all. I have rsd in my left knee (caused I believe from having my knee scooped back in Feb.2010). Long story short my knee needs to be replaced and I've gone to 2 different Knee specialist and neither one will touch doing a replace due to what they say is advanced rsd. I cannot comprehend that they expect me to live in this much pain. I'm real scared that the rsd is spreading to my upper leg and ankle. Do any of you with rsd know if this can really happen (the spread of it)? I do see a pain specialist for Fybro.Myal., and she has me on Suboxone. I love the Sub. for Fybro., but it does nothing at all for the pain I have in my knee and leg. They do want to try a spinal neurotransmitter for the knee but I'm not liking all the reports that I've read about them. The other alternative is some kind of pain pump thing. I just started doing some reading on this pump but I'm wondering if I have this pump put in, if the medication that goes to the pain area, will it only help the knee or will it also help other areas that I have problems with? My other question that I have for you folks is how do you deal with the depression from being in such pain. I hide in my bedroom from my family so they don't see me cry all the time. I hate this pain so much. I would really appreciate any and all advise you may have for me. Thanks for reading my post.P

CRPSpatient
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Date Joined Mar 2011
Total Posts : 1276
   Posted 4/17/2011 8:37 AM (GMT -6)   
Hi Patsy *gentle hugs* to you. CRPS/RSD is a beast, that's for sure *gentle hugs*

Unfortunately yes - it can spread. Mine started in my right knee after minor surgery nearly 12 years ago and since then it's spread to my whole body. It can also cause referred pain, and it's often hard to tell which of the two it is. Do you have signs of CRPS in your upper leg and ankle (swelling, discolouration, etc.,) or is it 'only' pain? Have they tried other meds for the CRPS - something like neurontin, lyrica or topamax? Is ketamine infusion available as a treatment where you are?

I have a spinal cord stim - I had my first one implanted in 2006, then had it replaced in 2008, when the CRPS spread from my right leg to my left. The lead for my right leg works quite well, but it's very positional - I get some relief from it when I'm sitting (I have to use a wheelchair a lot of the time, because I've got severe dystonia/spasticity in my feet and ankles that makes it hard to weight bear) but lying down I get quite good pain relief in my right leg. My left isn't so good - the first lead moved within a week of surgery; its replacement has moved again and is pressing on nerves/ligaments in my spine. I actually have an appointment tomorrow night to discuss when we can do surgery to fix it.

I also have a drug pump. The medication goes into the spinal fluid, which means that it's distributed to a lot of areas - but probably only below where the catheter is sited.

Depression - is a really hard one. I take antidepressants and although seeing a psych didn't help me in the least (it actually had the opposite effect) I taught myself a few coping strategies, mindfulness and body awareness (which can help with the pain too), self hypnosis, that sort of thing. Hopefully some of the others will be along soon with some more ideas.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

nana68
Regular Member


Date Joined Mar 2011
Total Posts : 474
   Posted 4/19/2011 7:36 PM (GMT -6)   
I have a question.I am trying to figure out what is wrong with me.How can a rheumatologist know if its crps or fibromyalgia if they don't do a bone scan?The rheumatologist says I probably have fibromyalgia but the only thing done(at her office)was blood tests for autoimmune or rheumatoid factor which were negative.Would a neurologist know about crps?I had emg and nerve conduction tests done and they were fine.I get burning sometimes and my left foot is sometimes cold and I also mottled skin .I have had the mottled skin for a long time though.The doctors are so fixated on blood tests but when I look up my symptoms most of the time they point to something i've either tested negative for or can't be detected by blood test. Is there anything that really sticks out with crps like any visible bone deformity cause I don't know.I am just tired of hurting and not having much of a diagnosis.Today and for a few days my tounge and throat are sore,it's happened before.When I went to the ent he said of its acid reflux and before that the regular doctor said its thrush.well it didn't turn out to be thrush and I am pretty sure its not acid reflux.I am sorry for making this so long but I do not know what to do.

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 4/20/2011 6:48 PM (GMT -6)   
Hi Nana,

There are a few tests that can be used to help diagnose CRPS but the problem is that none of them are specific - a positive result can rule it in, but a negative result can't be used to exclude it, if that makes sense? They include things like Thermography, which can show temperature (and therefore bloodflow difference) between limbs and Bone scans, which can show a patch osteoporosis. Sympathetic nerve blocks can also be helpful - especially as they're also usually the first line treatment for CRPS.

Do you have any changes in your skin, other than the colour? CRPS usually causes changes in hair growth - can be more or less than normal - often causes the skin to become thin and shiny, either really dry or really sweaty. Anything that sticks out as being different to your right foot is worth noting.

Please don't apologise for a long post. It's plain from your tone how sore and frustrated you are feeling right now :( *hugs*

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

nana68
Regular Member


Date Joined Mar 2011
Total Posts : 474
   Posted 4/20/2011 8:56 PM (GMT -6)   
my skin is extra dry and I have excess facial hair growth but I was also on steroids for a long time which also could explain my thin skin,it's not shiny more like scaly.right now my issue is with my throat and tounge and I am tired of the docs saying there is nothing wrong,if there was nothing wrong then my throat shouldn't feel swollen and my tounge shouldn't hurt.

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/21/2011 1:01 AM (GMT -6)   
Patsy, as Laura already stated, yes CRPS/RSD is an evil beast, and yes it can spread. I've dealt with mine now for three and a half years; it started in my right wrist, and has since spread to dominate my entire right arm -- from my finger tips to my shoulder, and then some beyond.
Also what sort of things have you heard about the SCS units? Maybe I can answer some questions. I went through a successful trial back in February and am slated for May 11th for my permanent implant. Unfortunately you will always hear more of the negative stories then the good ones, and I have made it a mission to try and get the word out that they do help, and they are one of the top treatments for CRPS/RSD.
 
For your depression being here is one of the best things; people that understand the pain you're in and are sympathetic and caring. This place was a life safer for me. Like you I break down at night in my room when I'm alone, or when I'm in my car by myself. I started anti-depressants a week ago when I noticed some changes in my daily habbits. Also stress plays a major factor in CRPS pain as it affects it greatly; the more stress you feel the more your pain is amplified. But don't bottle it up. Vent here, email those of us who share the same kind of vicious disease and talk to us. Laura has a wealth of knowledge because of what she's gone through, and I have some as well. You're not alone.
 
I wonder, have you tried nerve blocks yet? That's how they discovered I had CRPS. I went through a battery of tests and MRI's, x-rays, and saw specialist, after specialist. It wasn't till I was sent to a pain management doctor and he tried the nerve blocks that he figured out what was wrong with me and how far I'd progressed. That was two years after my initial accident that started it all. If you're not yet seeing a pain specialist I highly recommend one. Mine has me on strait Oxycodone, but eventually I build up a tolerance and every so many months we either change narcotics or he ups my doseage. We're hopefull that with the implanting of my SCS unit I'll actually be able to wean off my meds and regain some of my life back. At the very least I know from the trial that the pain will be easier to manage.

Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Have seen several specialists; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 finally diagnosed CRPS - Stage 2
Permanently disabled, on Oxycodone and Celexa.
February 2011 successful SCSU trial
May 2011 SCSU implant surgery

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/21/2011 1:13 AM (GMT -6)   
Nana, another way to check if it's CRPS or Fibro is the fact that one is localized (CRPS) and the other is wide spread. Usually CRPS results from an injury; say twisting your knee while hiking, or pulling a tendon while lifting heavy objects. The injury heals, but the pain remains. Physical therapy seems to make it worse, but so does not useing it. Infact the worst thing you can do is /stop/ using it.
 
As you may have read in my previous post to Patsy mine was diagnosed through a nerve block. If you've not yet seen a pain specialist, do so; they should be able to tell you if you've got fibro or CRPS. Some pain doctors use similar medications for fibro to treat CRPS, like Lyrica. Generally though when you get to a certain point narcotics are really your only option.
 
The hair growth is more then likely your steroids, as usually it's the affected area that has the hair/skin issues. I have not had any yet, though my arm does run the typical different tempature, obvious swelling, and different color as a result. While it's never been scientifically proven my pain doctor feels the fact that I take a daily hair/skin/nail supliment has probably helped me. I had originally started taking it to help my hair -- the high desert wrecks havok on long hair -- and have just kept taking it over the years.
 
Your throat and tongue could be totally unrelated. It could be anything from something like strep throat to an allergic reaction. I'm not a doctor though, so I can't honestly tell you.
 
However your burning pain, and coldness in the one foot does sound like CRPS. I know for me it's strictly my right arm. My hand and wrist gets swollen, and the pain is so bad I'd swear someone is twisting a red-hot corkscrew into various joints. Some days I can't even type or hold anything.
 
If you have any more questions feel free to drop me a line, or post them here; Laura has far more experience then I do as I've only been battling this for over three years. Besides, I think I've hit my limit for typing tonight as with the coming heat of summer where I'm at I'm being affected more and more; I hate being so sensitive to the tempatures. Remember most importantly... you're not alone. *gentle hugs*
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Have seen several specialists; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 finally diagnosed CRPS - Stage 2
Permanently disabled, on Oxycodone and Celexa.
February 2011 successful SCSU trial
May 2011 SCSU implant surgery

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 4/21/2011 2:04 AM (GMT -6)   
Rhaevin, I was wondering when you'd come along to help me out :)

That 'hot corkscrew' is the way I describe mine too - you can feel that burning sort of twisting its way into whatever bone or joint it's deciding to target at that given time. I'm so glad that you have your SCS surgery coming soon..... I'm struggling to believe that mine is just a week away now - very nervous though :(

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/21/2011 8:58 AM (GMT -6)   
Laura, between my depression as I get used to the new medication, and my regular flares up that my hand is frequently a victim of... which makes typing extremely painful, I haven't even visited to read save every few days. But I had to respond to a few posts -- certainly when those are hurting from the same evilness that I have.
 
*gentle hugs* I know you're scared, it's all moved so fast for you recently, but you know you need this surgery to modify your current unit so it'll work better for what you need it to do. You're strong, stronger then you realize, and you /can/ do this. At least they're just changing out your leads really, for me both with where they're going, and what they're doing I am trying not to be scared. Like you I know I'm in the best possible hands. And you know I'll be here for you, so you stay in touch with me! If I could go and hold your hand, you know I would. Although I think my ugly mugg would be the last thing you'd want to see when you finally came too.  smilewinkgrin

patsy123
Regular Member


Date Joined Sep 2009
Total Posts : 41
   Posted 4/21/2011 10:02 AM (GMT -6)   
CPRSPatient, thank you so much for your quick response. Sorry it took me so long to get back with you but my **&*&& teenage kids crashed my computer AGAIN. I've since gone and seen my PM Dr since posting and he confirmed that the RSD has indeed spread to my upper leg as well as down into the ankle. My knee over time now is starting to look pretty deformed (my husband get grossed out by it). I have done so far mullituple PT with no success, and also nerve block injections thru to spine (they did them once a week for 5 weeks) no help there either. I was diag. with Fybro approx. 10 years ago and have tried all the different types of Lyric, Cymballta, etc., and have found that I can't take them. I'm seeing my other PM Dr., today and I'm going to ask if I can go on something other than Suboxone for pain because it just does not help. (keeping my fingers crossed). Ive agreed to have the trial portion of the SCS unit and am now just waiting for theme to call me on when and where. Once again, thank you so much for sharing your story with me, it does kinda help to know someone else knows about what this is all about. No one in my or my husbands family have ever heard of this and it will make me feel very alone.

Rhaevin, The stories I've heard are of folks having the leads move or build up scar tissue and them not being able to remove them. I think now thou I will try anything in this world to get rid of this pain. I really like how much you and CPRSpatient share your knowledge and help so many of us at are wits ends. Please keep sharing. I've actually been reading on this sight for years and I don't usually post till now. I've been on Elavil now for 8 years and think it's time to maybe try something new (it dose not seem to be doing what it's suppose it anymore). Again, thank you for your advise, I hope we all can find some kind of relief from this.

nana68
Regular Member


Date Joined Mar 2011
Total Posts : 474
   Posted 4/21/2011 12:17 PM (GMT -6)   
thank you all for your quick responses.I have medicaid therefore I have to get referals and to do that whatever doctor I am going to(I got a referal to a rheumatologist)has to deem it benefical or necessary for me to get to see a pain specialist or for that matter to get any tests like bone density for that matter.There are so many possibilities of what it could be its not funny.people with ankoloysing spondolytis have some of the same symptoms.This morning a lady who I had previously written to wrote me back,she also had respiratory failure but she had it a few years ago,she said that what I am experiencing is normal and the doctors do not know alot yet of the side effects(if I am saying it right)of respiratory failure because only about fifty percent of people survive.Any way I guess I just better give thanks to god that I am still here.I could have any one of those problems including rsd I guess somehow I got to get the doctors to check everything before they say fibromyalgia.

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 4/22/2011 7:18 AM (GMT -6)   
Patsy - unfortunately the leads sure do move. I'm having surgery next Friday to replace one of my leads. This will be my fifth surgery for it including my trial because of lead migration. My right leg lead has been good, but my first lead for my left leg moved within a week or so of surgery and my second lead for that leg has moved as well.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/22/2011 9:22 AM (GMT -6)   
Patsy, to add to what Laura said. Yes, they do move, but they make new leads now; paddle leads. Unlike the normal leads which look like thin cables not much thicker then a toothpick (my doctor was happy to show me after he removed my trial) the paddle leads have a larger head. They are able to position them better, they give better coverage, and unlike the normal leads, they can be sutured into place to minimize any migration. I've been told by one Pain Specialist (who called me outta the blue after reading my story in Time Magazine) that you can suture the regular leads, but according to my Brain/Spine specialist surgeon it's very tricky to do so.
 
Please be aware, Patsy, that during your trial the leads will perhaps shift alot. I know it felt like mine would ocassionaly shift and touch each other and produce a jolting sensation. Part of this was because my leads were fed into my cervical space up near C2, and the other part is because they aren't anchored in any real way. The trial usually lasts ten days. I think the biggest discomfort aside from the leads shifting and ocassionally zapping me was all the tape and padding over my back, and the fact that I couldn't shower or take a bath. If you have any questions about the trial, please ask. Like I said, mine wasn't that long ago so it's still pretty fresh in my memory.
 
Also the big thing with getting the permanent implant done is research your surgeon. Find out how many implants he does a year, what his success rate is, what's the worst thing he's had happen to a patient. If you can find a way to investigate him then do so to double check to make sure you're in the best hands possible. For the trial this is not as important, but if you opt for the permanent, do your homework. I know I got lucky and because my pain doctor is as good as he is he only works with the best, and to top if off the surgeon is a spine specialist. I couldn't ask for a better team.
 
Don't be scared. Ask questions, be proactive in your drive for the best care possible. Take the time to educate your family so they can become your support team -- anyone with chronic pain will tell you how important emotional support is. If you want I can send you the link to the article in Time and you can share that with your family. Try to find a way to gently explain to your husband that his reactions about your knee hurt; after all, this wasn't what you asked for. Try to remind him you're still the same person inside, the woman he loves and married.  Wishing you all the best.

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/22/2011 9:27 AM (GMT -6)   
Nana, I've dealt with Medicaid before. Hopefully your doctor will work with you and give you the referals you need; some doctors get so funny about handing patients off to someone else. But given a pain specialist can handle a number of your symptoms, I would keep pushing to be seen by one if you don't feel your current doctor is doing much for you. I sincerely hope they can give you answers soon though so you know what you're up against and can begin a path to treatment to help give you the best possible quality of life. *gentle hugs*
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