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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 09-23-2007, 10:30 AM   #1
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Doctor wrote that I had CRPS in WC paperwork

I had truly hoped I would not develop this nor did I think I had. Until I read the doctors report sent to the WC IMO hearing. I have had 2 cervical spine surgeries and trying for a third which has been denied 3 times not for necessity but because my pain was not documented on ONE form being on the right side. WC said the MRI states I should have right side pain with the posterior herniation, and moderate foraminal nerve compression being where it is. You see most of my pain is left sided. I do have pain on the right side actually a lot of numbness. But WC only chose to look at one paragraph. It was noted that I have CRPS and that was well documented. I wish someone would have told me about that. And that is what brings me here.

I have read up on it a lot but still am unsure what to expect. For about 2 years I have felt a burning pain over my left arm from the neck to the hand. It is most of the time and I take Lyrica for it and it seems to help. I contributed it to having severe spinal cord compression for 18 months. I also have hand, wrist, arm, finger and neck pain. I have shoulder spasms and cramping either side. I have tricep pain both arms (doc noted radicular pain both arms) and one of the weirdest feeling is in my chest/lung area. My primary doctor even send me for a chest ct scan. It feels like I have dirt in my lungs. I cough to get it up but there is nothing there and the ct came back clean. Sometimes I have an awful taste in my mouth. Kinda like I got with strep thoat. I noticed my finger nails are so brittle they break every time they grow at all and have ridges and spots like I was calcium deficiant which I am not. Does all this sound like CPRS?

If this truly is this disease what can I expect? I am not sure if it is getting worse other then my lung deal. I am afraid of this, I am 44 with a 2yr old. I am still working and have good days and bad. I am trying to decide to file for a medical retirement which is not a bad deal financially howeverI have no idea how good the city will honor my medical.

Any assistance would be helpful.

 
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Old 09-23-2007, 11:53 AM   #2
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Re: Doctor wrote that I had CRPS in WC paperwork

classic symptoms. if there is no other explanation for your symptoms then it is crps

 
Old 09-24-2007, 01:34 AM   #3
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Re: Doctor wrote that I had CRPS in WC paperwork

Have to agree, it does sound very much like crps. I like you started 3 years ago with prolapse in cervical spine, surgery 18mths later and then developed strange feelings in other parts, ie burning legs, feet, swellings to r hand and lower legs, numbness, burning, tingling in fact the list goes on. I too take lyrica it does help to take the edge off pain in my arms but does nothing to help my lower back and leg probs. I do have further pathology to my lumber spine which has only been noticed since Jan this year following another MRI. It isnt the pleasantist of diseases to have but you have to work with it. Its difficult to comprehend but there are many treatments out there, although it seams there is no cure but pain management is a good option. You say you have a 2 year old, i really feel for you and complement you as you also work, it's very difficult when there are sibblings involved, i too have an 11 year old, but they adjust and grow up knowing how you are, you have to be strong for them remember. Keep reading on this site, i'm sure you will get strong feed back, i did and it helped.
Good luck, tkb

 
Old 09-24-2007, 08:37 AM   #4
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Re: Doctor wrote that I had CRPS in WC paperwork

Not what I was hoping to hear. I feel so out of it. Not sure what to think of feel. And wonder how I will feel and how long down the road. I am angry that neither my my spine doctor nor my pain doctor talked to me about this. And I just do not know what to do or where to go.

Tkb how long from the beginning of your injury did you start to feel symptoms? And if you will what happened first and on and on? How does your 11 yr old handle it? God, I wonder what is the long term?

Im trying not to overly focus on this and cause things to get worse but I feel like I was dumped on.

 
Old 09-28-2007, 05:51 AM   #5
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Re: Doctor wrote that I had CRPS in WC paperwork

Hi
My symptoms all started within about 8 months of my initial injury/prolapse, i guess it started to progress with time as the longer i had the prolapse the worse it got. The prolapse was in July 04, surgery was Oct 05! I had chiropratic treatment first for about 3 months but it didnt do anything, in fact i think it only hindered things as i didnt know i had a prolapse until my mri in Feb 05. I had physio at my hospital from Dec 04 until Feb 05 and i was getting so bad, pain seemed to be spreading so how from my neck, r arm initially to my lower back and legs, god my legs were getting really bad, swellings were developing in my lower legs and my knees were going red hot. My physion was great, she suspected there was something seriously wrong with my spine and got me to see an orthopaedic consultant as she refused to do any more treatment on me as i was ending up in tears when she did anything to me, after all i was supposed to get better with physio not worse! My mri was urgently requested by orth consultant with confirmed central protrusion at c5/c6 and other degenerative discs in cervical spine. I saw a neuro surgeon in May 05 who said i needed surgery which i had in Oct 05 acd, but it didnt do me any good, in fact i never fealt any different and then all the crps symptoms really took hold. This was confirmed by my pm in Jan 07 which was my first visit to see him, he said it was in my r arm and alot of my leg problems could be from my neck, however he suspected there could be further pathology in my lower spine so another mri was done within the week and low and behold i have a large bulging disc (very bottom one) and degenerative discs in other areas, in fact it transpires i have crps and disc degenerative disease and all this started at the age of 34!!! I have since Jan this year thanks to this wonderful pain management consultant had medication introduced which does help a bit, an epidural to my lumber spine in June and a cervical epi performed only last Fri. The first epi took the swellings away in my lower legs and gave me a bit of pain relief only in my lower extremeties for about 3 weeks then unfortunately all the swellings etc came back. The cervical epi had basically done the same again, swellings have been reduced only in my calfs and ankles, my r hand is still swollen, numb, hot cold, etc, and i still unfortunately have some pain my knees are still going hot and my lower back hurts , i'm obviously hoping it will do me some good and last longer than the previous one, we'll just have to wait and see on that one, so watch this space! I still take lyrica which does help moderately with my r arm pain and amitriptylene at night and nortriptylene by day. You asked how my son handles it, well my hubbie for a start is superb, he is my rock and god love him he suffers in his own way by me and my son is the same, i guess you just learn to adjust and live with the best of what you have. I have good and bad times, not good and bad days as it varies so much at any time of day and night. My hubbie works full time which i guess gives him an outlet to gain some normality and stability i just wish it was normal for him when he comes home, my son had coped really well, but then i suppose he was only 8 when i started with this and he has seen his mum change more so with disabilities, i cant walk like i used to i now use a stick, i can drive but only when i feel safe to do so, you know the usual things you take for granted just arnt there anymore, stairs are a problem for me they really get my legs going, bending, reaching, carrying are all difficult but you just do it the best you can. I'm sorry to go on and on but thats basically it in a nut shell, we just hope and pray the future looks brighter, i look at it this way, at least its not life threatening, the disabilities which go with it unfortunately are something you just have to get used to, its the pain which really drags me down but we have to be strong for our loved ones. Please keep in touch its good to compare notes and chin up its not all doom and gloom! best wishes, hope your on a good day tkb

 
Old 09-28-2007, 05:49 PM   #6
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Re: Doctor wrote that I had CRPS in WC paperwork

hi back,i still think the type of pain and what you mentioned in your posts in the spinal board really do sound much more like the central pain syndrome than RSD.considering you DID have the spinal cord compression and do have myelopathy,this alone could really explain the type of syndrome it appears you may have.the fact that you just do not appear from what you have stated that you have the more 'classic" outward signs of RSD like swelling,no type of color changes.you could however have actual sympathetic nervous system damage which could explain some other symptoms.either that or its a result of the cord compression and what it did and left behind for you.

what you really do need to find out at this point is whether or not your pain is stemming from spinothalamic tract damage that considering the compression that took place within your actual cord, could be a very real possibility or sympathecally generated pain which would indicate the possible RSD/CRPS.like i mentioned before,obtaining that sympathetic block would really be helpful in your case.this is exactly how my central was confirmed as being central from tract damage and not RSD.the block just did not work at all on my arm but where i do have the full spectrum or RSD symptoms in that right knee,when they did the block,it did affect my pain.its a pretty reliable dx test as far as anything can be when trying to actually Dx RSD.unfortunetly it is a rule out type of condition without any real positive way other than symptomology to go by.

i don't know if i mentioned this to you before or not but just do a bit of research on central pain syndrome and RSD and see how YOUR particular symptoms actually compare.just so you know,once you actually have any level of real spinal cord damage,you can get or feel some really incredible 'perceptionary' types of pain and sensation where it almost 'feels" like something is being done to your body or something is there but its not type things?really freaky stuff sometimes.this could possibly explain your lung issue.it actually does really 'feel' like things are there that are not,thats the perceptionary part of spinal cord damage.believe me,i have felt the most freaky strange wierd stuff i never ever thought possible since my cord was damaged back in 2003.its a ride,let me tell ya.

just do the symptom comparrison and see what you think.please keep us posted.marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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