Looking for suggestions in Pain Management while I wait for the Clinic

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After over a year of tests and back and forth with my GP, he has finally told me that I have CRPS...

My symptoms are hypersensitivity to the underside of my Right arm and pain which is like needles sticking into the skin, which will then flair up to the point where its like bee stings - a sharp burning stinging sensations which just comes in waves from my arm and up into my shoulder. I feel hot but to be honest, I've never noticed an actual temperture change, but it feels hotter during these flair-ups or breakthrough pain.

I've had Pregabalin - didn't work.

Tramadol - didn't work and caused mood swings

Tapentadol - Same as the Tramadol

Amitriptyline - Caused really bad mood swings, specifically rage.

So far, the only combo which offers some relief is a mixture of gabapentin (max dosage) + 2x30mg of Zomorph which has also recently been increased to include + 2x10mg extra of Zormorph but even with all those types of pain killers, the constant pain is managable to the point I can function with little discomfort but the breakthrough pain is still unbearable.

 

I've tried TENS, if anything, it almost felt like it made the pain worse. Regular excersise doesn't appear to help. I am still waiting to get into the pain clinic as there is a waiting list to get in, is there anything anyone can suggest?

 

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8 Replies

  • Posted

    Hi Nemoris,

    My name is Gabby Alley and I am 15 years old and have CRPS in both of my legs and in my back. I am on the max dosages of all of the pain management medication and have a stimulator for the pain in my legs.

    My doctor told me to do all of the same things and they didn't work and now there is nothing that they can do for me because I have Ben through all of the treatments possible.

    I hope that you have better luck that I did

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    • Posted

      I am sorry to hear that you've had to endure this for so long but given it has been 15 years for you, and I don't mean to sound crass, but I hope that I do have better luck as you as well. 

      While I say that, hopefully something new will arise which will benefit you.

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  • Posted

    It's a hit and miss what happens with pain meds. I take longtec 20mg and shortec 5mg 12 a day for breakthrough pain (oxycodone group) have you asked for your slow release tablets to be upped ? I find hydrotherapy pool relaxes the pain. Distraction techniques I find work. I find colouring or reading or breathing techniques when I have a flare up help.. where in UK are you ? I also did a pain management course at Bath Hospital was a good insight into CRPS... xx

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    • Posted

      I'm in the Southwest Devon, Near Exeter  and right now I am stuck on a waiting list to get into the Pain Clinic. It took them a long time to tell me I have CRPS as I also had a Syrinx and it took awhile to rule tht out along with the usual suspects like nerve entrapements and such. 

      My slow release has been upped from 2x30mg to 2x40mg twice a day of the zomorph but am only just starting the upped dose now.

      And I have tried distraction tactics, and it does help at times but when it is really bad, its just incredibly hard to try to not focus upon the pain, even though I know that just makes it seem all the worse. 

      I'm a bit a ways from Bath, I believe the ones I'm on a waiting list for are in Teignmouth, Exeter and Newton Abbott.

      Thank you for the advice, I hope that when I do get into the clinic that they'll be able to provide some insights like the Bath one did for you.

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  • Posted

    Acupuncture really helps me.  I go weekly.  It helps with the pain, but also works with my nervous system to help control my anxiety about the pain.  However, it is important that your acupuncturist is familiar with CRPS.  good luck
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  • Posted

    Hi, I have crps in multiple limbs , I had a lot of trouble getting the right pain relief . I was finally put on Palexia I take 300mg , I have no side effects . It's a pretty new drug 

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  • Posted

    I see a neurologist the only real place to get the help you need. Doctors that are not of the neuro feild are simply stupid and have no real training in this horrific condition. I take 1800 mgs of neurontin and  pills of oxycondone daily, It helps only about 50 percent of the pain but it's better than feeling like your buring in hell 24/7. Please see a neuroligst. Never quit. Jesus Loves you. karen

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  • Posted

    Nemoris,

         I don't know if you have read any of my comments or post to people, I'm not sure if it would help of not but if it doesn't help I'm sure it won't hurt. My son has CRPS and he is doing a regiment of Ibuprophen & Benadryl . He takes 2 of each 3-4 times a day and B-12 which is suppose to help the nerves heal. Since Benadryl is an Antihistamine it helps with the swelling around the nerves because Histamine is what causes swelling and Ibuprophen of course is an NSAID'S. He is also on Lyrica at bedtime. This is all a little new to us but at one point He had got up to use the bathroom when he was on crutches and he said it was like everything stopped working so he fell face first and still had the crutches under his arms while laying there I immediately called the doctor as this scared the crap outta me and He said to give him the Ibu/Beni combo and within an hour and a half he could use his crutches again. I hope maybe this may could help you at least a little. God Bless you and I hope you get the help you need soon...

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