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1 day ago · I'm having multiple odd episodes that are keeping me undiagnosed. Help in Brain & Nervous System

About 11 years ago I went to NIH looking for answers. I went down with a dx of Stiffman Syndrome. I got laughed at and yelled at for wasting their time. A couple of months ago I went for EMG studies and had contractions. I asked the doc if he knew what it was. Yes,it's Stiff Person Syndrome! In early 2000 I went to Boston, Greenwich, CT, and NYC. I received three separate dx. Autonomic dysfunction, orthostatic hypotension, and small fiber neuropathy. No one put together until 2012 when a pain management doc said that I had CRPS. Medicine is imperfect and I know I have a very unique body. Just with StiffPerson Syndrome I am one in a million! I don't do well with medications. Between allergies and bad side effects, I try to stay away from as much as possible. I do better with hands on thus osteopathic manipulative medicine works for me in many ways. My spiritual life keeps joy in my life and my nurturing skills puts my attention on my husband with dementia and my four children and five grandchildren. I feel fortunate to be able to still drive and also to do some chores from my power wheel chair, keep financial things in order, and spend time in my Christian walk praising and praying. Pain is part of my life. It doesn't rule my life but once in a while when I have had it and resort to oxycodone. Getting diagnosed is not a walk in the park but when someone finally hits the nail on the head, I have found tremendous relief, even when there is no cure.

6 days ago · CRPS in Chronic Pain

My CRPS is in both feet, my left knee, and left butt. I just rediscovered a video for exercises for people over 55 or with Parkinson's and they are all done from a chair. I did it about six days ago. Even with that it was painful and some I couldn't do as I also have been dx with Stiff Person Syndrome and anything dealing with my right shoulder area can set off contractions body wide. I am going to try again today. I know it is important to keep moving whatever one can and to delight in the fact that some days are better than others. Thanks for responding. Just as a side note – I haven't been successful in finding PTs who know how to deal with my CRPS, myofascial pain, Stiff Person Syndrome, Degenerative Disc Disease, and small fiber neuropathy.

Thu, Apr 11 7:06am · CRPS in Chronic Pain

I see a doctor in Pittsfield, MA even though I live in Albany, NY because he is a DO and does his DO thing as part of being my PCP. His gentle healing hands have helped me many times in the past 11 years. His other specialty is neuromuscular training. I have costachondritis as well as CRPS. It is pain in my breast bone and rib cage. He does a great job for me in knocking down the pain. That's not the only place. I also have myofascial pain and he is great with that as well. MA seems open to OMM. It would be great if you could find one near you..

Sun, Apr 7 8:10am · I'm having multiple odd episodes that are keeping me undiagnosed. Help in Brain & Nervous System

I prefer DOs to MDs. Most of my doctors are DOs. I find they have a better outlook on treating people with as little meds as possible. With my long allergy list to meds I find DOs far more sensitive to my needs. The last MD I saw for a procedure wanted to give me an antibiotic that produced anaphylaxis in me. He said it wasn't a true allergy, just a side effect. I refused to take it and he is no longer a doctor of mine. My PCP does OMM as part of my visit. He sees me for a half hour. He cares about me physically, mentally, and spiritually. He also happens to be the same age as my older son! My pain management doctor , also the same age as my older son and a DO, as did my PCP both asked me to be a patient of theirs – one through seeing me in an osteopathic clinic for osteopathic manipulative medicine and the other by a request from an older pain management doctor who couldn't deal with my allergies. They and my other DOs show more interest in the person they are treating than MDs who are looking for meds to get them out of the office. My husband's sleep doctor is a DO and the other day when my husband exhibited a strange behavior that has become normal to him, he has some form of dementia, the doctor pursued by asking relevant questions and asked me to get his other doctors to send him reports. He also expressed compassion for my situation. DOs aren't people who have been rejected by med schools as I use to hear. They just have, in my opinion, a deeper desire to help people in a different way than MDs. Osteopathy has been around for over a century.

Sat, Apr 6 6:39pm · I'm having multiple odd episodes that are keeping me undiagnosed. Help in Brain & Nervous System

I tried LDN but my pain level was too great and I was not able to take oxycodone with it. I am now taking CDB oil capsules and am pleased with the results so far. I have, when needed, been able to take the oxycodone.

Fri, Apr 5 5:01pm · I'm having multiple odd episodes that are keeping me undiagnosed. Help in Brain & Nervous System

I was dx with autonomic dysfunction years before I finally got a dx of Complex Regional Pain Syndrome. I probably had the CRPS when I was dx with the autonomic dysfunction but I don't think many knew about CRPS 20 years ago. My range of temperatures 93 to 98. Heart rate 43 – 140. Episode 3 sounds a lot like autonomic dysfunction. I have Reynauds but I also have small fiber neuropathy confirmed by two biopsies that cause very cold feet and hands, but then so does CRPS! No one has ever treated my a d. It does leave me wondering at times.
I have resolved my yellow stool by taking a product called Energy Greens in a smoothie. You might give it a try. Just google it. I think the founder's name is Yuri Elkaim – not sure of the spelling of that last name. I use it every morning.
Keep seeking. You WILL find!

Sat, Mar 30 7:36pm · CRPS Question: Itching in Chronic Pain

@freshair @rags @rsnowflake

I have a dx of autonomic dysfunction which, from what I have read, is found in all with CRPS. The doctor who dxed me is extremely bright and ever so talented at his job of pain management. I do not eat processed foods, am gluten free due to celiac, dairy free due to
lactose intolerance and an allergy to milk. Am allergic to most medications. I use oxycontin when everything else I have tried doesn't help
as much as I need and I am feeling overwhelmed. I was prescribed 30 ten months ago and I have 1 left. I take CDB oil. I use a tens unit
frequently as well as prescribed pain patches. I also use prescribed lidocaine prolocaine cream for those spots pain patches just don't
work. I am confident in my PCP and pain management doctor. They are both the same age as my older son and I have a great and unique relationship with each of them. They also both are D.O.s. My PCP does OMM as part of my office visit. I also have myofascial pain and he has tremendous healing in his hands and is well skilled in neuromuscular things. A recent trip to the neurologist got me a dx of Stiff Person Syndrome, something I have had for 20 years but never found someone who was familiar with what I had. He was able to dx me because I had an episode while he was doing EMG studies. Despite the challenges this body presents, I am blessed. God's faithfulness, mercy, grace, fantastic love and joy and His desire to have me be all He would have me be, encourages my spirit, my very being to rest in His peace and love as He teaches and guides me through the Holy Spirit.

Thanks for the tip about benadryl.

Sat, Mar 30 1:25pm · CRPS Question: Itching in Chronic Pain


I recently used a boot like the one on this website;

I had my laptop fall off the arm of my chair and scored a direct hit with a corner right on the midpoint of my left foot. i used the boot for 7 months as the swelling and pain also from CRPS made getting into a regular sneaker impossible. It kind of rolled when I took a step which helped with pain. I now have wide Hoka sneakers that have a soft top which allows for swelling. Helps a very wee bit with the CRPS pain on bottom of foot. It's so much fun experimenting! Tried a medical store for sneakers. They were very old looking and had
velcro closures instead of laces. After several tries there, I went back to Fleet Feet. The funny thing the prices were about the same but the quality and appearance was vastly different. Hope you find something that will work for you.

I also have a Workers Comp case and am waiting for approval to have two low back RFAs. Supposedly they are suppose to respond within 30 days. Have a good weekend.