[Coffeebean]

I am going through a really rough time right now. I was diagnosed in May 07 with CRPS II in my left arm after two ulnar nerve surgeries resulted in RSD. Over the last year I have been very lucky in that I have been able (at times) to get my arm to calm down to where I don't feel the pain or burning to much. The in an instant I will go into a major, painful flare for no reason that I can pinpoint. I am just wondering if anyone else experiences this type of symptom. I get so excited because I think the burning pain and deep ache of RSD are finally gone, then in a blink of an eye, I am right back to almost those first days of miserable, high level pain again. I will always have the swelling and the terrible stiffness, but the pain just puts me over the top.

Always with a flare I keep getting the feeling that my RSD is either on the verge of spreading, or already has spread. I will get bouts of severe pain and swelling in other parts of my body that never were a problem before RSD. For instance, when I am in a bad flare, my right knee swells and becomes so painful it is difficult to wear pants, bend it or walk. This will come and go with a bad flare in my arm but it is typicall not as painful or as limiting. I know fore sure I never had this in the knee before I got RSD in my arm.

Also, RSD did spread hand to shoulder in my left limb within a matter of two months after the first surgery. But at times I can feel that terrible burning pain and ache in my right ulnar nerve, just exactly where I have RSD and ulnar nerve damage in my left arm. It can get really bad but I can get this to almost completely stop with meds and rest. Something that never happens with my left arm. My left arm always feels injured and crippled.

I guess my question is this - does anyone else feel a sense that this disease (or whatever it is) is lurking in other parts of the body, just waiting to hit? That is how I feel since getting RSD in my arm. I feel so vulnerable and weakend from this disease that I am afraid any day it is going to take over my entire body.

Is there anything I can do to calm the fear and ease flares when they happen. Can spreads be prevented? I live my life in fear of further injury so much of the time because I feel like I just can't take on one more pain site.

Thanks for any feedback.

[dreambeliever128]

I am exactly where you are at. Only might right arm is the worst and the left is now showing problems.

I started getting triggerpoint injections a few weeks ago in my left chest area for the chest pain and I wear lidoderm patches everywhere. Like you, I try to rest and stay calm to get it to calm down.

As I told you before, I have had TOS surgery on the right side, 2 rotator cuffs, ulner nerve, and triggerfinger surgery.

My left arm seems to get in the same shape if now worse at times then my right.
I have been trying to figure if it's spread or if it's ulner nerve or the TOS on the left side acting up. I do have an ulner nerve being pinched on the left side and also the TOS so it's hard to distinguish at times.

It will mirror also. I have had mine to mirror over and that is different also then dealing with what you are talking about. I wonder if you are also dealing with ulner nerve problems on the right side due to overuse because of the right side.

I find it hard to ease a flare until it lets up but the TPI's do help me a lot.

I am seeing my Cardiologist today to see what is going on with my CAD and if my heart might be some of my chest pain. I have delt with Angina before but I can't take meds for it. The meds cause the chest pain too.

I would maybe see if you are dealing with an ulner nerve impingement on the left arm. I know you don't want surgery but maybe they could do some shots to calm it down.

I am also dealing with the leg pain and having trouble walking too. I had to change out of jeans last week because I couldn't walk with them on. They weren't tight either. Today I have on pants with elastic and I am still having problems walking. Like you, I can't figure it out at times.

I am really sorry that you are going through this. It sure doesn't seem to end. You might try hot baths with epson salt. They make me worse but they help others. Also heating pads.

Hope you start seeing some relief soon.
Ada

[Coffeebean]

Ada, thanks for your insight. I very well may have nerve impingement on the non-RSD side (right) as well since I use it so much more. I never thought of that.

Well, after weighing the good and the bad for two months, I went ahead last week and had a root canal on a back molar. I was feeling great for two days then the bottom fell out and I have been burning and hurting everywhere. The RSD arm is by far the worst. I just got back from a return visit to the endodontist and he numbed the area again and wrote a Rx for antibiotics. It seems the top of the tooth/bone is infected. He said most patients have no trouble with this and it clears up right after the root canal but oh not, not me. I never heal well or quickly. That was even true before RSD.f

I liked this guy but he does not know a thing about RSD so I am now afraid I made my situation worse by having this done. I had a consult with an oral surgeon before making my decision and he said pulling the tooth is harsh on the nerves as well so he said to investigate both options and make my decision. It is so hard to know what the right decision is when it comes to RSD because so few doctors/dentists see it or have to deal with it. It really is left up to us so much of the time I guess.

I wonder if we will ever know in our lifetime what is the cause of this disease or better yet how to hault and/or reverse it. I pray for this for all of us all the time. I never give up hope for a cure or at least better treatments.

[dreambeliever128]

I had to laugh when I read the part of you never healing quickly. I heal pretty quickly from surgeries accept the TOS but damned if I can't seem to catch any disease or illness that comes along.

I believe Drs. and Dentist, unless they actually have RSD just donot get the extent of it. They see it as any other medical problem that they are dealing with. It doesn't sink in the extent of the pain, the spread or that it just doesn't seem to want to go away.

I just got back from the Dr. They are scheduleing me for a stress test. I dread that too. Like I'm going to be able to finish that thing.

I think when it comes to teeth being pulled with RSD that would be the hardest to deal with. Dentist would most likely know nothing about RSD and I don't know if a SGB would keep it from spreading into the head area. I would ask about a block though to maybe halt the pain and/or for any other teeth you have to have done.

I don't think a cure for RSD is in the making due to the lack of knowledge or want of lack of knowledge of it. It goes back to thinking there are not enough people that have it to warrant the extent of research or concern that other illnesses seem to have.

You know, I have had RSD since around 98 and at this time I am off of my Methadone except for having to take one every once in awhile for the pelvic pain. I see a new Dr. on the 23rd for that. Although I am off of my pain med, I am still dealing with pain in several areas. I wonder if a person gets it completely calmed down at any given time.

I know it's hard on anyone being in this pain. I actually have thought many times about ending things due to it. As I said, I don't think people actually get the extent of it.

Make sure you try to rest and not overdue. I think that makes us much worse.

Ada

[Debby]

Hey Ada & Coffeebean,
Ok, I had to have all my teeth pulled & fitted for dentures since getting RSD. I was nervous, but thankfully the dentist I see has/had another patient that had RSD in her upper extremities so that really helped me out. He really really NUMBED me. Before he ended up having to pull them all, he had done several root canals. The problem that happened that made it where I lost my teeth when I did was because I lost my health ins. I lost my prescription coverage. I was able to get all my meds but one for free from the pharmaceutical companies. That one treated my Sjogren's Syndrome. It made my salivalary glands produce plenty of saliva. Without that drug, Evoxac, the glands almost quit producing saliva completely & without saliva, your teeth do NOT stay healthy. And well I simply lost them to decay, no matter how often I flossed or brushed. And I took good care of my teeth even way before RSD came to call at my body.

Anyway I didn't have any problems with RSD moving into my face thank God!!. I did have to fight off RSD taking over my hands & lower arms. I had a total of 5 nerve blocks on each side 2 yrs in a row & so far it has worked.

Keep asking around if you need alot of tooth work done for one who might atleast know of RSD.

Good Luck,
DebbyV

[dreambeliever128]

I lost all of my teeth before RSD. It might have been a blessing at that. I lost my top ones by the time I was around 22 and my bottom ones by the time I was about 34. I was never healthy from childhood and always had tooth problems.

As I said, it might have been a blessing due to the RSD. With my luck it would have caused more problems.

People can't tell I have false teeth due to how good they are made and I can wear both top and bottom sets.

I don't know how I'd deal with teeth being worked on today with the RSD. I would worry like Coffeebean does due to the lack of knowledge of Dentist about RSD.

Glad to see you posting again. I know you had been having some rough days too.

Ada