WHAT GOOD? WHAT GOOD DOES IT DO 2 GET ON THIS SITE AND BEG 4 HELP?

I started on these forums years ago because there no one I could find that really cares or understands except people that also suffer. It's a good place to let it out without losing anymore people close to me.because they are tired of hearing about something they can't possibly understand. So let it out

I had ketamine infustions which helped me.   I’m now in remission.  Wish I could offer a solution .

Hi Rocky.

I am so very sorry that you are in so much pain and are suffering.

Can you maybe do physical therapy in a warm therapy pool? This is the type of physical therapy I did.

It started with range of motion exercises in the deep end then started walking in waist deep water. There are aqua therapy exercises for upper body CRPS too.

I am sorry that you can't get to your daughter's graduation. Can a family member or friend who is going do some sort of live feed to your phone or computer?

I'm sorry about your kitty too.

I have a nineteen and a half year old cat, Sea Ray. She is a Calico.

She is declining, arthritis in her paws, mostly deaf, kidney disease and losing her night vision. I've had her to the vet twice this year for bladder infections and was giving her subcutaneous fluids for a few months.

She is my baby. I have no children. It will just about kill me when it is time to let her go. I pray she passes by herself so I don't have to put her down. So, I understand how you feel.

Please try taking Benadryl or another antihistamine. I take Benadryl. It has really helped me!!!

Benadryl is not a "Benzo".

Keep taking it, give it time to start working.

Plus it knocks me out at night.

I am praying for you.

Tracy

I also found relief with a prescription antihistamine, Hydroxyzine HCL. It really helped the pain and put me to sleep but I had really "trippy" dreams that I couldn't handle so started the Benadryl instead.

Tracy

Oh, Jimmy...

So sorry you are having such a horrible time of it. Sick, and sick of being sick!

If and when you can come up for air... If not already done, take a look at a piece by Dr. Nancy Sabjen on the RSDSA website; Nov. 15 2016: Medication Summary for Intractable Pain CRPS/RSD. Lots and lots of very good suggestions here, that have worked for her patients. She is a bit outside the mainstream, but often speaks at CRPS conferences and is well-respected. I was hoping you might get some mileage out of one or more of the creams she suggests, as your face and head are acting up so.

Keeping you in my prayers, hoping you have better days soon.

Sabrina

Jimmy and Gary,

So sorry you have had such trouble getting seen by knowledgeable clinicians.

Even though I'm a nurse, I had terrible trouble finding clinicians who believed me when I said that I had what looked and felt like CRPS (after all, as a nurse case manager I had seen this disease before, for pete's sake).

I, too, got that deer in the headlights look, even from pain physicians an neurologists.

It felt like a slow-motion train wreck that only I could see: I kept trying to warn my clinicians this was getting worse, and spreading to my entire body, but they would just say stuff like, "So... Your hands do look a little red. Maybe it's Reynaud's. And your knees are red and swollen today, so maybe you have Rheumatoid Arthritis. You need to quit stressing out so much over your symptoms, because getting upset will just make the pain worse". I wanted to beat them about the head and shoulders, but it just would have made my hand pain worse!

In desperation, I finally emailed Barbie Ingle, a long-time CRPS patient, and media advocate for chronic pain sufferers, to ask her what I should do, how to find treatment.

She was very nice and supportive, mentioned the local chapter of a CRPS group meeting in Chicago, and suggested I check out the care team at Drexel University.

Unfortunately, by that time, such long-distance travel was out of the question for me; I couldn't stand crowds, noise, people brushing up against me, or even sitting up in one place for 2 or more hours without severe pain setting in.

I did eventually get the diagnosis at Rush Pain Center, Chicago, from some well-respected clinicians. But it Took.Two.Years. The thing that was really frying their brains was that they had seen patients' signs and symptoms gradually spread over time, such that their CRPS ended up being full body. However;  they had never, at least at the time I came to them, had a patient just waltz (or in my case, limp) in the door who already had full-body signs and symptoms.

You can bet that before they decided it truly was CRPS, they freakin' ruled out Lyme Disease, Sjogrens, Lupus, Hoof and Mouth, and the Bots...OK, maybe not the Bots, but you get the idea.

This is the long way around to saying that for you guys it sounds like it's time to start calling or emailing the national or big-city chapters of RSDSA, or contacting the big teaching hospitals that treat CRPS, and asking the pain center there for contact info on local or at least regional clinicians who have the experience to treat you.

Even if they are at a distance that makes it so you can only get there once, on a wing and a prayer, and then worry about the logistics of follow-ups later, it is so, so worth it. One doctor who knows what he or she is doing when it comes to this disease is worth a dozen of the deer in the headlights folks, for sure.

The only other advice I have is that the younger physicians, just through with their residency or fellowship, have often had more exposure to CRPS education. Some of the older physicians still don't believe it exists, or still suspect it's mostly psychological. Or even worse: Want to do some crazy stuff like sever your nerve tracts or keep injecting you with sympathetic nerve blocks, over and over, in the same place, even if they aren't helping much. This ends up being like having the nerve severed, as above, except it just takes longer to do the damage.

I was lucky enough to find a new, young primary care doctor ten minutes from home, who totally believes me, is willing to partner in my care, and took it upon herself to read my medical records, which currently fill a 4-inch binder. Go figure! Her office nurse is great, too, and very knowledgeable. It's a good thing they are so nice, because I end up calling them about once a week with some bizarre symptom or medication reaction or other. These are the sort of conversations that usually end up with: "If it doesn't go away after you do XYZ, head straight for the emergency room!"

When you feel able, or if you can rook a family member into doing it for you... Make those calls. People in pain management, the good ones anyway, want to help. Give them the opportunity to make your day.

Wishing you a restful night, or what passes for one at this point in time

Sabrina