Hi I have Diffuse Scleroderma and like you I to am on Gabapentin at a high dose. I take it for the nerve pains which are a result of my tight skin. But like you they don’t relieve all the nerve pains I get. I was told that they actually might not do that but would hopefully take the edge off of them. I’m thinking of seeing if there is anything else I could take that would stop the awful burning pangs that come and go because they can strike anytime anywhere which I’m sure you yourself are aware of.
Sorry to be of little help but just wanted you to know your not alone in finding little relief from this particular pain med.
Hi Cole57. Thank you for that.The pain clinic told me to increase my dose of Gabapentin. I was just reluctant to up it because it does seem to effect my mental alertness. May be I might try though. Your words much appreciated.
Hello there, SS doesn't cause muscle spasms. Pain causes muscle spasms and this could be related to any of your conditions, especially Fibromyalgia. If you reduce your pain then you will reduce your muscle spasms. The two go together and reinforce each other. If you can find a way to relax your muscles (heat, massage, warm bath, gentle movement, acupuncture, TENS etc) then the pain will reduce and if the pain reduces then the muscles will not go into spasm.
You mention being on gabapentin which is often used for people with Fibromyalgia and chronic pain. It is not a muscle relaxant. Drugs like Diazepam are muscle relaxants. Gabapentin is an anticonvulsant. It is used to treat epilepsy. it does this by reducing the activity of your nervous system and calming it down. Pain is an electrical message carried by the nervous system and by reducing nerve activity it is hoped that pain will reduce. It is hard to explain, so I hope that makes sense.
You are very informative. Thank you. Have you has SS for many years? Or are you in the medical profession at all? Just wondered!! Thank you very much for all you advice. I do have Acupuncture and have the little needles that I insert myself daily in my ears. I also do Yoga and Pilates. Do have lots heat appliances as well. I do find it very difficult to relax and I have leatn to moderate activities. Which is really difficult for me.
Hello there, in answer to your question I have had inflammatory arthritis since 1994, and scleroderma since 2004. I am an Occupational Therapist and I have worked in Rheumatology and pain management since 1994. So yes, quite a bit of personal and professional experience over the years
It sounds like you have lots of things that you can do to help. Most people find it difficult to relax and pace themselves. We tend to have lots of rules and high expectations for ourselves and when we have health problems these get severely challenged and bring lots of emotions like guilt, fear, anxiety, frustration and so on as we try and do the things we want to despite the problems. Go easy on yourself. Look after yourself.
Hi Lucy, I wonder if it helps you being an occupational therapist!! Bless you. It is probably hard to take your own advice, sometimes. Bet you do a good job though.😉 You are right about the emotions. I get very frustrated, especially at the gym because I can't get in positions I used too. There is certainly fear for how fast I will deteriorate. Goes with any Heath Heath problem though. Also I am a very social person and rally hate having to canc l arrangements because of a bad days. I really don't want to give impression I am moaning and probably am. It is just good to talk about conditions with people that understand. There are so so many far worse than myself. Heartbreaking really. Anyway Lucy thank you so much for communicating and explaining. Wishing you a very good year ahead without too much discomfort. No doubt speak again. Fuchiaxxx
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