I suffer from CRPS TYPE1. Any one can help

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Hi, I do live in oxford. Ive being diagnosed for 1 year and half with crps type1. Ive been doing hydrotherepy fisio as well but it looks is fetting worse than before. I do have on my foot but when the worse days starts i do not want to live the worse pain that never stops. Im taking Pregabilen 450mg a day Naproxen 500mg,baclofen 10mg,amitriptyline 20mg,oramorph 10ml a day ive got the menthol cream as well. I also try lumbar sympathetic block into the spine to block the nerve, it did not work. My last option is the have the nerve stimulator but is a waiting time up to 10 months. Is anyone have or tried any of these please. This crps completely it ruins your life i cant walk im scared that it might get my other foot too. My last fiso was the balanced life course at fisiotherapy.

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  • Posted

    I live in Montello and have had crps for the last 4 years. I had carporal tunnel surgery on both wrists. It started in my right wrist 3 days after surgery and the left followed about a month or so later. I have tried all kinds of meds and the only thing that reduces my pain from a 20 to a 7 is Gabapentin 3600 mg a day and Nortripoline to try and help me sleep. My doc. says I am allergic to opiates so pain meds are very bad for me. I am also allergic to lidacane. I had to sue work comp. and won. ssd sent me to there IME and I was found to be disabled. I also am going to have the test for the nerve stimulator and if it works the main surgery after that. I go through Advanced Pain Management for my pain. I hope all goes well.
  • Posted

    Hi there.  

    Have you ever spoke to doctor about reducing meds.  I am saying this because when I was on lot of meds like you my central nervous system just kept going crazy.  Pregabilen (Lyrica) can give so many side affects including depression etc.   I was on 75mg and when I taped off it. My brain felt much better. More in control and do you know what. Pain was same so in fact it didn’t help. 

    Amitripiline.  After few months it started giving me dystonia in my back.  Total stiffness.  I had to also stop it. I changed to Cbd oil to aid sleep.  Bacoflen made me very drowsy and also made my muscles too weak.  I changed that to good grade magnesium. 

    How’s your diet ? I need to follow a good clean diet.  Once I stray pain increases.  

    I do feel all the meds and nerve blocks made my crps spread.  THrink my body was crying out for me to calm it !!! 

    I have it two years now. Was left foot now full body and face.  I use paracetamols and cbd oil.  Meditation and pacing.   Hydro pool is great ! Keep that up.   

    Obviously apeak to doc about medication first. 

  • Posted

    I agree with Brenda about pool PT, that is the best, and it is so important to keep that limb in motion or you will get a frozen limb. You are right to worry about it spreading, it does and I don't know how to stop it. Mine started in my right foot after ankle surgery and went up that leg, it is now on the left side. I happened to have an SCS already in for my lower back and it happened to luckily reach down to that ankle. My rep worked very hard at programming it to hit both my back and my ankle.  My back is still taken care of and I would say the SCS took the edge off the CRPS pain, maybe reduced it by about 30%. This was a critical point though, I was able to now get around by cane, I was able to cook a bit, go to the grocery store, it made my life a bit bearable.  I ran out of PT visit so I got to Pilates 3 times a week, I can't really do anything that puts weight on the foot.  Have you heard of mirror therapy?  I do that daily and it helps a lot. You get a mirror box, hide the bad foot in the box, you do range of motion exercises with both feet but you look in the mirror which reflects the good foot and tricks the brain into thinking you have two good feet.  After the first two days it didn't hurt anymore to exercise my bad foot as long as I did it in the mirror box LOL.  Brains are funny.

    I should preface this paragraph with I am a retired PM doc. So, as for medications, the very best one for neuropathic pain is by far, gabapentin. I HATE and detest gabapentin, I call it my fat and foggy drug, but I take 400 mg three times a day because without it I couldn't function. I think you should get your docs to switch out your lyrica for gabapentin. Are you getting muscle cramps? If not, then you don't need baclofen because that is what it does, prevent muscle cramps. Naproxen is an anti-inflammatory and I really don't see what good that is doing here, this isn't an inflammatory state and Naproxen is a toxic drug. For instance, if I took it, I would go into acute kidney failure. I am that sensitive to all of those NSAIDs, some people are, and you can get that way by taking them when you don't need them. The amitriptyline is an excellent pain drug, take it at night to help you sleep too, it is a great drug in a PM doc arsenal and most patients love it too. I can't believe you can stand to put menthol cream on, doesn't it burn like holy hell?  The cream you should be on is a ketamine based cream, that actually has a chance of curing you.  The lumbar block had a chance of curing early stage CRPS, it is worth a try.

    Of all the things mirror box therapy, ketamine cream or IV therapy, lumbar sympathetic blocks, these have all been shown in large studies to have an actual chance of CURING early stage CRPS. Using drugs like opioids, gabapentin, amitriptyline, baclofen, continuing with PT for ROM exercises in the affected limb are all things to do to keep the patient functional.

    Lastly, while you wait on the SCS, see if you can get on the list for the dorsal root ganglion SCS, that has been shown to have a much better success rate with CRPS. It target the exact limb with the CRPS and the exact sensory signals coming up from that leg. I was offered that, but I chose to have an intrathecal pain pump instead because I have other areas of pain.

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