Quote:
Originally Posted by maddiesgram
Hi everyone,
I was diagnosed with RSD 2 years ago but didn't believe it until this week. It happened after I broke my little toe on my left foot. I really shattered it down in the joint (3 years ago in June) and when it didn't heal I had surgery on it to take the dead/shattered bone out. About 3 weeks after surgery, instead of getting better I got much worse and could barely take the pain. The surgeon didn't believe me. I ended up seeing a number of docs and finally seeing an ortho. surgeon who diagnosed me. He sent me to a pain doc who "confirmed" the diagnosis with 3 lumbar sympathetic blocks. They only helped for about 10-12 hours. When he said that the only thing he could do for me was a spinal cord stimulator I was really scared and found another pain doctor. I still see him (not quite 2 years). He says that I do not have RSD because the pain, although screaming severe, is only in my little toe, with some burning in other toes and some redness in foot as well as toe. I've seen about 10 doctors that ALL say that I DO have RSD. I saw 2 last week and they absolutely say that I do. But my pain doc says that it is nerve damage. This week I saw a foot surgeon because I was considering amputation. He did this: He injected 5cc of Marcaine in my toe and all around it. He said that it would be very numb to a normal toe. He told me that if it relieved all of the pain he would try an ampution with no promises. He said that if the pain did not go away after numbing all of the nerves going into the toe, that it was surely RSD and to go to pain management. The pain did not go away. I am just SO sad. I had the hope of the amputation and now just don't know how I can survive with this pain, almost total lack of support, financial deep problems, isolation, not being able to walk... and other things. So many losses. I don't know how I can hold on. I can't stand up long enough to cook because any walking or standing causes the pain to go up and up. Therefore I eat junk and some fruit. The depression is severe but I can't afford counseling and don't qualify for free things... I'm in the middle. It's just so hard to take that this will never stop. How do you do it? How do you have any life? I don't see how I can. I'm sorry for this pity-party. I just needed to tell someone how I feel and have no one. Hope you guys are doing OK. By the way, my name is Gail. I'm 55, divorced, and live in Texas. I have 2 grown children, both married, and one granddaughter. You can probably figure out her name- lol. Thanks for reading this. I'm sorry it's so long. I hope to "meet" some of you.
Take care.
gail
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Hi Gail and Welcome to NT, I'm glad you found this forum. It's full of wonderful caring people. We are all at various stages of 'grief' Getting this diagnosis, and then realizing remission is slight chance, is overwhelming. The national organization-RSDSA had their annual meeting here in Scottsdale, AZ
this spring and I attended. Several Drs. spoke and the the next day was for the Drs. & therapists etc. I believe on this site it mentions the McGill Pain Index-lists RSD as 42 on a scale of 1-50. Also on this site there is a place to put your zip code and you'll get a phone number and name of support group leader closest to you. Being part of a RSD support group is very encouraging.
I don't always go, but when I do, it's always encouraging and informative.
Just a word of caution to think about- I would pace myself on how much information you take it. Too much too quickly can do the opposite of what you want. It does take time to absorb the magnitute of this disorder and the losses we experience and our future dreams being altered.
My name is loretta, 61 married,one daughter and son in law. a kitty and our daughter and son in law moved back from Chicago and are staying with us. We love it, except our kitty doesn't like their little min pin. But our house is large and 2 stories, so they have their own floors. smile They all have done research about RSD and my daughter has done depositions about RSD-she is court reporter so they are compassionate and understanding. I'm grateful for that. We live in Arizona 12 years-moved from Oregon. We love it here-Oregon rain and cold would be tough with RSD. What part of Texas do you live in?
Weather makes a huge difference with our pain. I'm sorry you can't take pain meds-can you use patches?
I got RSD a couple years before we moved here, but didn't know it. Had painful physical therapy for frozen shoulder that was a result of surgery. I was diagnosed 4 years after the surgery. I now have full body, internal. 5 years ago found a wonderful Dr. He is a nuerologist, psychiatrist, and pharmacologist. When I was diagnosed full body, by a new neurologist, he suggested psychiatrist. I didn't like his two references and didn't like him, so I looked in yellow pages and found this jewel of a Dr. I saw him once a month for 5 years and now seeing him once every 2 months. This disorder has been devasting to our pocket book. I was building our home base business, but when I got worse, couldn't get out very much.
There is another site that I learned a lot from -rsdrx.com A Dr. from Florida is retired now, but still has his website up. The part about puzzles list
is 146 questions from rsd patients and his answers. Really informative.
Is your little toe a workman's comp injury? The federal government accepts rsd as social security disability. There is information about it on NT.
RSD affects the Limbic part of the brain that causes depression, short term memory loss, or like we are talking to someone and forget words etc.
RSD is a autonomic disorder which means it affects our involuntary organs-blood pressure, circulation. I'm going to try the Hyperbaric Oxygen Chamber. My Dr. just built two clinics with HBOT in each of them. I take Cymbalta-anti-depressant that works well on nerve pain. Also take Lorazepam which is an anti-anxiety med that helps calm the sympathetic nervous system. Also take 2 blood pressure meds. My Dr. just finished a 200 person trial study for seroquel and fibromyalgia. The study had a wonderful side benefit of sleep aid.
So many of us have insomnia. I wasn't going to sleep till 5-6 a.m. it was awful, now I'm sleeping 10 hours at night. That cut my pain level way down.
RSD affects our immune system, so I am on a high anti-oxidant diet and superfoods. I took good notes at our nutrition RSD meeting, I'd be happy to send them by PM-private message if you's like.
I hope this isn't too long and overwhelming. Just wanted to share some ways that have helped me so much. Journaling is a wonderful way of expressing feelings. We all have shed many tears at dealing with this very painful disorder.Take care, your friend loretta soft hugs
