Is there anyone out there suffering form these two diagnosis? I have been in so much pain since 2003..well not that severe back then but enough that it motivated me to seek help and I have been diagnosed with everything under the sun from Lupus to polymyalgia rheumatica! Anyway I have peripheral neuropathy and it has gotten worse since the last year and then I started having the same pain in my hands and arms that felt like my feet! So my doctor sent me to a rheumatologist and I am finally relieved to know that what I have been dealing with is truly real! I am not glad I have the disease, but I am glad to know I am not imagining this. So now my biggest problem is pain. I can not hardly walk and when I do it hurts so bad but I grit my teeth through it, but when I get home it hurts so bad that I am in tears. If I use my hands, the same thing. I am currently taking the maximum dose of neurontin and relafen and cymbalta, and diabetic medication..I don't remember the name as my doctor just changed it. Does anyone out there have any advice and understand my pain. I am only 42 and I am trying to get on disability because I can not work and another depressing thing...my memory is shot! I was always a quick learner and fast on my feet...not anymore. I am sorry if I am sounding like I am whinning I have just found all this out and I still have to go to my follow up appt with the rheum. does anyone have suggestions on good questions to ask him regarding seronegative arthritis?
Hey Marie -
I can't help you but I wanted to say "HI!". I'm not sure if their are people with both diagnosis here - if there are I'm sure they will pop in.
I can't even help with the sero-negative - I was waaaaaay positive when I got diagnosed.
We do all understand your pain. These diseases are beyond hell. You are not whiny! When is your next appointment? What meds are you on currently? Have you done any research? Any specific questions? If you tell us whats happened so far, we can offer suggestions to ask the doc. How does that sound?
Pip
Marie - welcome aboard. It's a tough crowd, but there are some topnotch posters in here that know alot through experience, and we all had that same first post like you just made. Welcome. CathyThank you both for your welcome. I really appreciate it!Be sure start keeping accurate records of what is happening to you. I strongly suggest a journal. That way you can see what is and isn't working.
Also, get copies of everything the doc does from now on. Copies of tests, doc notes, everything. Get a binder and start keeping it in order. When you have the info in front of you you are much more able to make informed decisions on your own health care.
Also, you need to start researching the med choices you have. There are basically 2 camps - the auto-immune camp (your body is randomly attacking itself) and the infectious etiology camp (you have a intracellular infection).
Unfortunately (or fortunately :-) I chose the AP (Antibiotic Protocol) method and am on antibiotics to control my PRA. I cannot help you with much info on the traditional meds but there are a lot of people here who can and will jump in and offer advice. You have to figure out what makes the most sense for your situation.
Pip
Hi Marie,
I have diabetic neuropathy and arthritis, too. I am a lot older than you are though. My foot surgeon told me that I had Charcot foot, which is something that no diabetic wants to hear. I have had burning and pain in my feet - some from arthritis, some from nerves. 6 weeks ago I had surgery to release the nerves on my left foot and to have it rebuilt. I already have regained more normal feeling in that foot. This is a controversial surgery, but if it works, it is like a miracle. It is like a carpal tunnel, only on the foot. Mine was done by an orthopedic surgeon, not a podiatrist. I would recommend an M D because you have complicated medical problems.
This is the surgery I had, including a nerve release at my ankle and at my knee- http://www.annalsplasticsurgery.com/pt/re/annps/abstract.000 00637-200412000-00002.htm;jsessionid=HBGTLcW0K5JGTchrGGDVj6y hHxS5JGzLp4y223nhQzZVr2hMQXJM!1330140564!181195629!8091!-1 You can click on a link to read the full article from there.
Here is an article from a podiatry site on nerve surgery- http://www.podiatrytoday.com/article/4421
Another article-- &nb sp; &nb sp; &nb sp;
http://www.dlife.com/dLife/do/ShowContent/type2_information
Welcome Marie,
So glad you found us!!!!
Hugs
Marie, I don't have diabetes, but I am sero-neg. and have peripheral neuropathy. I was on super doses of neurontin for years and didnt think it was helping. I asked my Neurologist about Lyrica and he said no, that the neurontin was doing it's job. I just recently started seeing a pain doc. and he switched me to Lyrica and I noticed a change immediately. No painful burning legs, feet, arms, and hands. I am thrilled with it. I hope you fing relief soon. Hugs!
deb