Behcet's Syndrome Society
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How do you cope with pain?

Over the last year I have been experiencing increasing pqin in legs and feet aside from usual neuropathic pain. This is cramping of leg muscles and feet if I take a few steps, only partially relieved with rest. Tried quinine and gabapentin to no avail and only pred seems to relieve it. Also started with a stiff neck, but this time the pain is in the top of my Neck/ bottom of Skull, inside my shoulder blades and upper left arm. Only codeine and paracetamol reducing the pain but breakthrough pain is terrific and leaving me wretched and nauseous. It's at least an 8/10 if 10 is being unable to breathe due to the pain. I have high pain threshold - 3 csections with minimal pain relief and none after 12 hours, but this is killing me. Has anyone had similar and what was the cause and treatment. Currently on planquil 400mg daily, 22.5mg methotrexate (weekly) 25mg amitriptline, 15 mg folic acid(weekly), 10mg prednisolone and 6x 30/500mg co codamol on average daily

2 Replies

Hi and so sorry for your pain. I started with theses same symptoms about 18 years ago and it has been a long, long journey. They lasted for about 2 years and it seemed nobody could help me or tell me what was wrong. I didn't really receive any treatment as I hadn't been diagnosed with BD then, in fact I hadn't heard of it, although I had all the symptoms re ulcers everywhere, fevers, weakness, muscle and joint pains. Anyway as I say those symptoms went as quickly as they arrived. Now eight years ago they came back with avengeance. My neck, back of head, right shoulder and down arm and fingers. The pain was even worse than before and I honestly didn't want to wake up in a morning. Eventually the doctors arranged a scan and I was diagnosed with degenerative spondylitis . I was on very high doses of gabapentin. 3600mg a day and tramadol 1800mg....and no that isn't a typo error. I still didn't numb the pain enough. Eventually after about 3 years I go to see a pain consultant....and he is my life saver!!! I now only take 600/900mg gabapentin and no more tramadol ever for me (terrible side effects and withdrawal symptoms). I get trigger point and steroid injections every 12 to 15 months and they really help. I now also have problems with my lower back, left groin and leg and will be having injections for this soon.

Also I have been experiencing terrible cramps in my hands, legs and feet, of late and trouble with my ears. Which brings me to a med....carbamazepine......which was prescribed for my ear and facial pain. Now it didn't help the pain too much just made me feel drunk and tired all the time, but my cramps stopped almost immediately. I did finish the course and then cameo from it and started with quinine which is helping some but not as good as the above med.

I have suffered with BD for 30 years and it took12 years to get a diagnosis and I was one of the first members of the Behcets society. Over this time so much has changed, more research, the Internet , this site and I have noticed that many of the symptoms that patients present now we're totally rule out as being BD related and I just had to soldier on alone mostly. I have also seen that many other sufferers are having these. Spondylitis it BD related....who knows???

Anyway I hope this helps you to understand and gives you some questions for the docs and eventually helps with your pain.

Do let me know how you get on.


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This may be a silly suggestion but it applies to me during a flare and its something very overlooked when we are sick. How much water are you consuming a day? Make sure you're hydrated. I know I am really prone to dehydration for some reason, especially during a flare. The muscle pain and joint pain and head pain all decrease if I am properly hydrated. Try doing 8oz every hour.

Feel well soon


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