Reflex Sympathetic Dystrophy Support Group

I was kicked in the left side of my head and left knee when I was 15. The diagnosis was RSD. The docs eventually would add Lupus, Fibro, MS, bleeding disorder, herniated disc and degenatrive disc disease to the list. I was diagnosed with RSD for a SECOND time after a car wreck broke my left leg requiring surgery. I haven't been on any pain medications in 5 months because the docs say there is nothing more that can be done and QUIT on me. This is the 3rd doc that has quit because there is nothing more that can be done. We are now seeking a palliative care doctor that can do pain medication. I have an appointment with one in May. Through all this I have been battling to get disability for the last 3 years since our car wreck in 2008. My husband says last night that I would snore for a minute and then say OUCH and go back to snoring and OUCH and that he listened to that all night. Needless to say you can tell that lately my pain has been sky high. I will be glad to be back on the pain medications once again for some relief.

Sara

Hi Sara,

I hate to hear of anyone getting RSD when they are so young. And, with so many other things added to it, I can't imagine how difficult it is for you. I'm guessing that your doctors have not wanted to prescribe narcotic pain medications to you, is that what you mean by pain medications? Usually they would not mind at least giving you some Gabapentin or Lyrica, both of which treat neurological pain, or even an anti-depressant like Cymbalta that can help a bit with pain. I take Gabapentin and it does make a difference, at least. Have you tried it? I also take Cymbalta. Also Lyrica, as you probably know, is used for fibro and would probably help. Not both Lyrica and Gabapentin, but one or the other would likely be helpful. I'm sure the next doctor will talk to you about them.

I know that some doctors are reluctant to treat you with stronger meds when you are young, but I think it should have to do more with the situation and the person, not the age. There are reasons such as a patient becoming tolerant to medications when young that are I think considered by some doctors as well as the fear of addiction. It has to be very frustrating for you, but I can only suggest that you do all you can to locate that next physician. I wish you the best in finding a good one that can treat you well for all the problems you are dealing with. I'm so sorry you have so much.

What else have you tried? Have you done any physical therapy? Have you tried a TENS unit? Also, a pain psychologist could help not only in teaching you coping techniques but also things like biofeedback that might help at least some. What I've found is that I can't rely just on meds, but have to use anything that helps even if it's just a 5% difference. Literally I have a couple of candles that have wonderful, calming scents that at times I use to calm me and help a little bit. Lavender is very good for that. It sounds silly when your pain is extreme, I understand, but I'm just telling you that many small things such as whatever distracts you best, will help some.

Sara, read some of the old posts here and see if you think the group can be of help to you. There are people here with many years of information about RSD and also who are very supportive. I hope you'll give the group a try because you have so much to deal with and we do understand the pain and also will believe you about how bad it is. I wonder if your doctors really did.

Glad you came to the group and hope you find a good doctor soon!

gail

The TENS unit causes more pain. I'm on the Lyrica for Fibro. The last 3 docs have said there is nothing further to be done and the last one said I needed palliative care that there is nothing more to be done. I went off the meds for 5 months to be able to think clearly about if this was something I wanted to do. It has become clear the pain meds are really the only option because I can't be off them. The biggest issue I have with going back on the pain meds is that my liver and kidneys are super sensitive and start shutting down within 3 to 6 months.

I keep telling my husband my arms and legs are burning but he says I'm ice cold. Grrr!

Hi Sara,

You have a laundry list of pain I noticed. Bless your heart for seeking out answers and not giving up. I was reading your problem and had a thought. You said you have an appointment in May and that your body starts shutting down from the pain meds after a few months. When you go to the doc ask about a pain pump. I've read about them a little.

They use a tenth of the pain medication than oral doses and don't interfere with your organs from what I understand, but ask to see if that's a possible option. hugs, Lucky

Hi Sara, your list sounds almost like mine. The day I turned 38 I had a bad gall bladder attack. When they took it out it was grey and dead and was in the process of turninginto gangrene. Afterwards I was still in pain, 6 months and a lot of tests later they found a tumor in my stomach that was growing where the stomach meets the esophogus. Since during surgery they found out it was growing in the inside and outside so they cut the top part of my stomach off but nicked the muscle that lets the food in and the acid out. Now I have ulcers and a hernia on the surgery site. Once I healed from that I had 2 months of no pain. Then I moved my daughters dresser (solid oak with marble top) by myself by sitting down and putting my back to it and pushing with my legs against the wall. 2 weeks later I helped my inlaws move and I helped carry furniture etc... I was in so much pain but I thought I pulled a muscle. When I finally went to the doctor and they took a couple of MRIs they found 5 herniated discs and told me I have degenertive disc disease and that the 2 in my thorasic area they could do nothing about but that I needed surgery on my neck. So I had a fusion at C4,5 and 6 with a titanium plate. 2 months after that there was a popping noise in my neck and I was in the worse pain ever. After 4 years of hell (nerve blocks, so many meds., PT ) Finally 1 of many pain doctors thought I had RSD. So they told me the only thing left to do is the SCS. They tried twice with it, the 1st one the wires slipped. Now I will be 51 in a month and out of almost 13 years I have had only 2 months of no pain. By the way the gall bladder attacked happened on my 38 Birthday!! It took 3 years to get dissability. After 2 times on our own we hired a lawyer and half way through it the judge stopped everything and said there is no way I could work. Thank goodness they give you a check for back pay from when they recieved the 1st set of papers. I really think they keep saying no just to wear you down and stop trying but don't give in. Even if you have to get a lawyer it is worth it. If you don't win he does not get paid if you do win he gets a percentage of the check for back pay only.

I am sorry for writting my life story but with my birthday coming up and reading what you have gone through makes it all come back again. I finally have a great doctor and I am on strong pain meds. but because the RSD has spread everywhere even in my stomach I do not feel drugged of doopey or any sort of high feeling, just less pain.

I will be praying for you and many gentle hugs to you!!

Cindy

Luckyduck mentions the pain pump which I really wish I could have but it would have to be put at C2 too close to the brainstem but it is a very good idea!! I have done a lot of reading about it and had a pain doctor explain it to me. Good luck and God bless you!

I can't have a pain pump because it requires surgery and I can't have the surgery. They won't touch me because of the bleeding disorder I have.

Cindy I'm sending you big hugs. I sure hope you get a break from the pain soon.

Sara

Sara thank you for the hug. I think some of my pain right now is I can't stop crying. My youngest son is in the army and leaves on the 30th to Afghanistan and it is a dangerous job that I can't talk about that he has to do. Actually I don't know much of what he has to do either because he can't tell me much either.

I am sorry to hear you can't have surgery. Is it because your blood does not clot and it keeps bleeding? sorry I normally would know the name of it.

Many hugs back to you and I will be praying for you!

Cindy

Yeah my blood refuses to cooperate and clot. Also during the last few surgeries my heart has stopped during the surgery.

Sara