Quote:
Originally Posted by AnnieB3
Nanc (and Kathie), I don't have RSD/CRPS. It must be very difficult to live with.
I have heard that some people are having relief from biofeedback.
http://www.mayoclinic.org/diseases-c...t/con-20022844
Nanc, Some of your symptoms sound like lupus. Have you been seen by a rheumatologist or been tested for that?
There's a level of inflammation with RSD, too.
Anything that adversely affects the nerves (central or peripheral) has the potential to affect MG. It's not as if you can disconnect one system in the body from any other. 
Have either of you tried adjunct therapies such as acupuncture? Revamp of your diets? Have you spoken to any Eastern medicine practitioners?
http://www.rsds.org/pdfsall/acm-2010.pdf
This is a short video, but one thing they briefly touch on is staying away from things that increase any nerve/RNS sensitivity, such as caffeine. The doctor on the show is Joshua Prager, MD from UCLA.
http://www.youtube.com/watch?v=kkUVGKUAc8w
I think when you have something like RSD, you really need to pull out all of the tools possible. Certainly do not give up hope!
Also, have you been fully assessed for oxygen saturation at night? A BiPap can help but you really need to know if your oxygen is dropping at night. A pulmonologist can do an overnight oximetry (done at home).
Since you're gluten sensitive (or possibly have CD since they dropped the Reticulin antibody test!), have you been tested for any deficiencies? Iron, calcium, B12, D, zinc, etc.?
What questions do you have about MG? Or do you want to wait until you know you have it? If you do have MG, try not to let your body get hot, since that will make MG worse. Extremes of cold can do it, too. If you can't breathe well, swallow, or move well, you should go to the ER.
I think it's important not to chalk up any new symptoms to the RSD. As so many of us know, you can have multiple problems at one time!
It's the hormone changes during and after pregnancy that can affect the "neuro-endocrine" system, as they now like to call it.
This is a very complex issue, so I hope you both have good doctors helping you. It sounds like you do.
Annie |
Hi Annie!
Thank you for your reply and info! I have not tried biofeedback yet. My PT for my pelvic floor dysfunction was going to start that next for me, but I had to take a break from PT because of having both of my spinal cord stimulators removed in January. They are hiring another PT so hopefully I can get back into it, at least for that part. If it works there, I thought I could try it for RSD as well. I am not able to drive so my husband has to drive me and he works an hour away from home. Transportation is an issue right now. I am not going to even try acupuncture. I have thought about it, but when a single needle stick can cause RSD to spread, it is not something I am willing to risk (especially when the RSD in my upper left arm was caused by venipuncture injury).
I was tested for lupus, lyme's, fibromyalgia, etc. Interesting fact about the CD antibody test, did not know that. I have been tested for CD, well I don't remember exactly how many times, but it has been a lot. I went GF several years ago and noticed a huge difference! My PCP checks levels pretty often - I am severely deficient in vit D. I am also low in potassium and vit b12. I take D drops, potassium supplements and get b12 injections (in my non-RSD upper arm). I cannot get out in the sun, I break out in a horrible rash even with a few minutes exposure. It is not caused from any meds that I take or have taken - we ruled everything out.
In addition to the gluten issue, I am deathly allergic to pork, fish and shellfish
I have interstitial cystitis and gastroparesis. All of this limits my diet incredibly!! My urogynocologist has me following the IC and low oxalate diets - boy is that tough!!!
I am certainly trying not to chalk up everything to RSD any longer. And I am trying to pay more attention to my symptoms. I will definitely follow yours (and Kathie's) advice on when it is important to go to the ER and what to discuss with my dr (oxygen, etc).
I am sure I will have more questions, but will wait until I know for sure. If I do, then I will need to find a good neuro. I have a great PCP, but need a new neuro and pain management dr (working on that). You would think that being in a town with a medical college/teaching hospital, that there would be some great doctors...not so much!
Oh, I have never been pregnant. Unfortunately I had a hysterectomy and o-rectomy (EVERYTHING removed) when I was 29, I am now 47. I know that is a huge hormonal change...that was when I developed all those food allergies.
Thank you again for the info and links, I will check them out later today.
Nanc