Posted , 6 users are following.

Things are very bad. My whole entire scalp is feeling like my left side of my head and face. Going to have to shave my whole head again and cover my entire head and neck and both sides of my face with lidocaine patches. Occipital and Trigeminal Neuralgia is at its worst. I was told today that my hydrocodone and Xanax is going to be stopped by my Neurosurgeon (which I understand he's not pain management). The CRSP is out of control. My neck hurts so bad with chronic muscle pain and spasticity. My body is vibrating nonstop just like before my surgery for Craniovertebral Instability. Left arm constant spasms or spasticity is so painful. Vision is worse in left eye. Migraineheadache as well. I look like Frankenstein's monster. Blue tight latex glove and compression sleeve on. Lidocaine patches won't st on chin and front of my neck. If I move my jaw to eat, talk, even smile they start peeling off. I'm going to miss my daughter's graduation in VA as I am in SC and cannot travel. My baby, my 17 yr old family member cat wasn't put down today. Vet made one last effort with steroid shot and steroid med starting Sunday. At least I saw Him eat and go to the bathroom today for the 1st time in almost a week. Losing Snuggles is going to be extremely difficult for me and my family. He's a mild calm mannered baby who has comforted me as I have been stuck on my couch only to lay on my right side only. The body ache from laying on one side for 2yrs has taken it's toll on me. Now they are setting up an appointmentfor physical therapy for me and I cannot move anything without suffering even more that I am. When considering the severe Neuralgias and chronic spreading CRPS I am not going to be able to do physical therapy. I will make that known at my pain management appt. on the 17th of May. Again, stripping these meds from me under all of my physical disabilities is going to throw me over the edge. I really hope that this site is monitored by medical professionals so they can hear my scream for HELP!!!! ANYWAY, BACK TO THE TITLE.


Sorry everyone. I take your suggestions and, well I can't even say HOPE for help

I'm out,,,

Jimmy, not so much Rocky now. This sucks. Sorry for being inspiring I tried........

0 likes, 16 replies

16 Replies

  • Posted

    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

  • Posted

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

    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.


    • Posted

      Dude, what I've found after years of researching everything 24/7 is that nothing is going to truly work. So I smoke a lot of weed. It's a good escape for me🤒

    • Posted

      Illegal in SC and I am a veteran with VA benefits for my family. Gary I'm in checkmate. Thanks for your suggestion.

    • Posted

      Sorry to hear that. Hopefully they'll pull there heads out. And give our vets something that really dose a lot of good like weed. I never thought I would be a believer pot. But I am now.

    • Posted

      I also took marijuana the first 2 years of CRPS. I ate an Indica marijuana edible at bedtime. I would try to find an Indica strain that was best for pain, sleep, spasms, relaxation and the least amount of negative side effects.

      It was a lifesaver.

      I stopped taking it a year ago.

      Medical marijuana needs to be taken seriously.


  • Posted

    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.


  • Posted

    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.


    • Posted

      Thank you, Sabrina. I was just told told by a nurse at the new pain at MUSCLE (the biggest hospital here in Charleston SC that the they could not help me. My appointment was scheduled on May 17th. She said she would be happy to make a referral to anyone who could help. How about that? Yes, I am wits end. Things are very bad. I'm about to muster up the courage to go shave and shower so I can reapply the lidocaine patches. Yes, this is even a difficult task. Again, thanks for the advice, thoughts, and prayers.


    • Posted

      Wow! That is crazy that the biggest hospital in a large city can't help you. That is not right.

      Praying for you.


    • Posted

      I fell ya dude, I've spoke to many,many so called specialist just to be referred to another. Right now I haven't been to any doctor in months because when I talk to them it's like the deer in the headlights look I get from them. It's almost like they don't believe me. That's why I gave up on the medical community. I still have to use a walker to get around. I get through each day by telling myself this is just the way it is. It's hard to except cause I'm only 54.

  • Posted

    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 timesmile


    • Posted

      Thank you Sabrina, you are very kind. Obviously you have read my messages and you are trying to help just as you've have already done. I'm trying, it's extremely hard. I don't have much support here which makes this more difficult. I'll keep trying to find someone who can treat me properly.


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