CRPS symptoms and doctor?

[shell74]

I had L5-S1 fusion surgery this past August and was doing very well. At about 3 months I started with "nerve Pain" from my hips to my toes. I have that feeling you get just before a full blown "falling asleep" tingling 24/7. I also have pain, numbness, cramping, burning, weakness and freezing cold feeling varying throughout the day. I also have areas on my upper body, specifically my collarbone going back around the neck, forearms and inside of elbows, that also get the burning feeling throughout the day. I dont wear shoes or socks much because they drive me nuts, most of the time I wear slip on clogs. I cant tolorate sheets, so I only use a fluffy velour blanket. My legs are ripped up, because when they burn and itch I cant tell how hard I am scratching. It is so strange how sometimes I am hypersensitive an other times it seems I dont notice a thing.

Anyway, I was sent to a neurosurgeon because I have scar tissue at the fusion site and my PCP felt that maybe the cause of my neurological symptoms, along with a history of mild archnoiditis. The NS said that my symptoms dont make sense and he doesnt feel there are any issues to be dealt with surgically. He did mention that I should return to my PM doctor and the possibility of CRPS. This doctor was less than helpfull and I felt like a pain in his ***.

I am not opposed to speaking with an experienced doctor, just not sure if my symptoms even fit CRPS and what kind of doctor to look for. Any suggestions would be greatly appreciated!

Thank You,
Shell

[dreambeliever128]

I too have problems with sheets. I cannot find any that I can't count the threads with my body. I can feel every thread. Like you at times though, it doesn't bother me.

Another thing is tile floor. I put tile in my hallway and there are times it doesn't bother me and other times it feels so funny to my feet. I can't explain that feeling.

As far as Drs. I think you have to keep looking until you find one that knows RSD, is open to treating it in anyway that he feels might help the patient and if he gives you any lip, move on.

There are so many of us on here that have seen a lot more Drs. then we would like to have seen. I had less good luck with PM Drs. and Neurologist then others on here. My PCP finally took over my care of it.

They have to be ok with giving you narcotics if it turns out they are the only thing that helps you. They have to be open to new treatments too. There are so many new things coming out and where they work for one they might not work for others.

It does sound like RSD to me but you need to find the right Dr. to diagnose you as I said. Sleep is something too that I don't get because of the RSD. I am now pretty much in remission but I still don't sleep.

IF you are diagnosed with RSD, you might want to try some blocks.

Ada

[shell74]

Thank you so much Ada, As I said I do have mild arachnoiditis and epidural fibrosis anterior to the thecal sac and surrounding the S1 nerve root. So I feel I do have possible reasons for some of the neurological stuff, however both the OS and the NS say these things are not the casue of my issues. Round and round I go,lol. I made an appointment with my PM doctor, I was scheduled for a block but I want to speak to him more before he does it.

Take Care,
Shell

[DianaA]

Hi Shell, I just wanted to welcome you to BT. I have full body CRPS 20years in July. I had 3 series of SGB and got temporary pain relief from them each time, for which I was thankful. I hope things settle down for you. Let us know if you get the blocks and if that helps. Again welcome. di

[angelrsd9]

hi and welcome to BT. my husband also had fusion at l5-s1 and bone graph in 07 and he still has alot of pain...i mean alot. im in no way saying that you have rsd.. i hope that they can get you some relife. i have full body rsd for 11 yrs .. i have had the SGB's alot and they barely work for me ... i think with finding a doc it has to be someone that knows rsd and its ugly head and treats there patients like ppl . i would see about goin to a good pain managment doctor .. i really hope that this finds you well..

welcome again

carrie

[shell74]

Whats the difference between a SGB and a nerve root block. My PM doctor wants to do a selective nerve root block at S1. He says the nerve root block would help many "reasons" that I could be having pain. I would really like some sort of conclusive idea what I am dealing with before I start numbing areas and covering things. He only wants to do one side too, which I am not sure will do much.

My feeling is that an EMG would tell if I have actual physical nerve damage that could be causing pain or not. Would RSD show anything on an EMG, I would think not since its not a compression or pinch, but I dont know?


Thanks Di and Carrie!

Take Care,
Shell

[dreambeliever128]

EMG's are something that we talked about many times on the TOS forum. To me they are useless. I had 3 and they didn't show that I had TOS, Rotator cuff, carpal, or any of the other things I had going on. I don't remember anyone saying they had been used for RSD due to the needles being used. To me they are painful. I don't know as it would show anything on the RSD. Others might have a more input on it.

I had 3 SGB's and they did help put my RSD into remission. It sounds like what he is thinking is that you might have some nerve damage that the other would help.

Hope this finds you feeling better today.

Ada

[shell74]

I went back to my OS yesterday and laid it all on the table. I was not letting him get to the door till he answered my questions. He now agrees that something is not right with the burning, throbbing and cramping from hip to toe, especially since I now have the same intermitant feelings in my forearms, wrists, collarbone area and chest. He walked out and called a collegue in, and they set me up to see a physiatrist and a neurologist tomorrow. He also said something about having a series of injections tomorrow, but he didnt say what.

Any suggestions of questions for this doctor would be appreciated.

Thank you,
Shell

[dreambeliever128]

It sounds like the injections may be blocks. They go usually in a series. If it is what they are talking about then it may help put the RSD in remission.

The Dr. that mentioned possible RSD he is most likely right. Some Drs. are pretty up on it and know it but they don't want to commit to diagnosing it at times for some reason. I dealt with that same issue. I saw 2 TOS Drs. that knew I had it and yet they didn't put it in my paperwork or tell me. I do know they didn't want to do my surgery after seeing me about 5 times so that made me think they knew.

A lot of Drs. donot want to do surgeries on patients with RSD. I have been lucky to find ones that will and do a block before the surgery.

I am glad they are addressing this but they should tell you what they feel you have.

Ada

[shell74]

Thanks ADA,

I have been doing alot of research and looking at pictures. I know I shouldnt be jumping to conclusions, but its hard when you arent getting clear answers from the doctors. From hypertension that they can not control, extreme sesitivity to cold, hands and feet that plump up and get rock hard, angina and burning/tingling chest pain that they cant locate a cause. I was even treated for shingles for several months a few years back, although they never found a rash.

I will go with an open mind, but at this point I really want to demand some sort of explanation.

Thanks,
Shell

[shell74]

I officially have had enough of this crap. Some doctors seem to think we are complete idiots that dont remember what they say or do. My OS supposedly arranged for me to see this other person in his practice to start with some injections, I get there and see this guy and aparently he hadnt spoken with my doctor, had no clue what I was talking about and said no he wouldnt do injections, but rather manage with meds, as we allready are. He said he doesnt see anything to be concerned about on the MRI and doesnt think I need to see a neurologist since there is no nerve compression, he also said my PM doctors thoughts are to radical and I should stay away from him. Also he said that I had good ROM considering I had fusion only 7 months ago and he saw no new herniations. OMG, we freakin know that, the MRI is clean, thats why we are trying to find the problem. He walked out and brought me a sample coupon for Lyrica to replace the neurontin, which I told him my insurance wouldnt pay for, but he said those are my choices. When he was out of the room I took a glance at the summary from my visit 2 days earlier, it was open right on the counter. Under impressions the OS writes 1. Status post L5-S1 PLIF 2. Bilateral Lower Extremity Dysesthesia with isolated areas extending into the upper torso and arms. This doctor didnt check anything, no reflexes, no strength, no sensation, all of the things I am complaing about. He wants me to start water therapy again next week. What fun, just what I want to do, be a boiled lobster. I am having a really hard time not being negative at this point, sorry.

Am I way off base here? Am I really asking for to much? I am really starting to think I am crazy. I am really beyond upset, I went to the parking garage and called my PCP, who is on maternity leave, she called me right back and called for the neurologist to see me on Wednesday. I dont usually see doctors at the hospital I work at for obvious reasons (even though I have been off for almost 18 months I am still on staff) , but at this point I need someone thats going to listen. I started to drive home and called my DH, he wasnt to far away so we met and went for some ice cream.

Oh well, home now, relaxing on my recliner. Hoping for a good weekend.

Shell

[CRPSbe]

Shell, seems like there's serious miscommunication going on. It's his way or the highway. I had some doctors like that, they tend to forget that it's your life and you have to live with the consequences - not them. So, you DO have a choice. You always have a choice. I'd get a second opinion.

[shell74]

Off to a neurologist tomorrow that my PCP wants me to see and then my PM doc next week. My OS replaced the neurontin with 75mg of Lyrica 3 times a day. It doesnt seem to work as good as the neurontin for me, but at least I dont look like I am drunk. I started PT yesterday too, he couldnt find reflexes in my ankles or knees but thats just par for the course.

All I want is some sort of DX or answers before we start covering symptoms with high doses of pain meds, nerve meds and injections. I dont think I am unreasonible.

Shell

[EJK]

Shell,

Don't go to that appointment tomorrow empty-handed. Make sure that you write down all of the issues that you want answers to. Doctors take notice of patients who document things.

More than a few doctors have been surprised when I show up in the office and summarize what we covered in the last visit. Then I layout the things that I want to make sure we cover moving forward. Try it!

Take care and keep us posted.

:cool: EJ

[shell74]

This guy wasnt exactly a complete waste of time, although we didnt get very far. He said my exam was OK except the hypersensitive response to the reflex hammer (I felt radiating burning/tingling for a few minutes after he hit) and the lack of reflexes in my ankles. He said the lack of reflexes and leg tingling on the left can be explained by the scar tissue on the MRI, however he doesnt feel this will go away, it is more than likely permanant due to the scar tissue. However, he is puzzled by the burning that I have, since the upper body is similiar to the lower. While I was there my hands puffed up and went back to normal within 30 minutes too. He would not comment on anything and wants to do EMG's of all extremities. Needless to say I am very leary of that considering the NS's comments about CRPS! I will see my PM doctor before I schedule the EMG's to see what he thinks.

I just dont know. Thanks again for the suggestions.
Shell

[shell74]

The pain management doctor said that he feels I have an issue steming from the damage/scar tissue area from my fusion surgery. He said something about the brain not careing what area it sent the pain messages to anymore he called it "deranged".

I had the EMG's done and besides the damage to my left leg nothing else showed. He wants me to see a rheumatologist and mentioned both CRPS and Fibro. I dont fit into any one category. They are very hesitant to say CRPS because I do have the scar tissue in the spine. He said no matter what the dx, the treatment will mostly be the same. I have an appointment next week.

In the mean time my PT has put me on hold, things that were easy for me 3 months ago are now require so much effort its not even funny. My therapy is still in the water, but previously I could do 30 reps of step ups, lateral step ups and toe raises for each leg, now I can barely do 10. He measured my strength and compared it to last months measurements, I lost 10-20 pounds in each area.

Enough complaing, just wanted to give a quick update. Hopefully this next doctor will have some thoughts.

Shell