Fibromyalgia

[ch1982]

Pretty much every day I wake up feeling extremely stiff and achey all over and my feet are swollen. It's a lot worse if I've done any kind of exercise the previous day. It usually gets better throughout the day unless I am flaring and then I feel like it all day, along with the extreme fatigue, headache and ulcers. I have up until now put it down to the Behcet's but could this be fibromyalgia? I don't know so much about the condition, only that it often overlaps with Behcet's. Any thoughts?

[Doryjay]

I feel like this everyday and I have Fibromyalgia as well as Behcet’s, the pain in my back and hips is horrendous during the night, it hurts to move. X

[Dayzi]

It may very well be! I have been diagnosed with fibromyalgia on top of Behcet’s (amongst other things!) although I think like Behcet’s, Fibro presents different for different people.

I’m not sure about the swelling and stiffness, that sounds more like Behcet’s to me (although I could be wrong). My understanding is that Fibromyalgia is an issue with the central nervous system sending pain signals to the brain where there isn’t anything really causing the pain (though this is just one explanation). For me my Fibro causes random pain throughout the day in really specific places (I.e one spot on my left thigh) or I have widespread pain that can feel like my skin is crawling or burning or aching or however the pain decides to manifest that day. Although another main symptom of Fibro is fatigue (and sometimes like brain fog/confusion - I get this). I take amitriptiline to help dampen the pain signals and it helps me sleep throughout the night (as I believe Fibro messes with your sleep which can exacerbate your fatigue) - I find these meds massively helps with my pain and also manages my fatigue throughout the day (although too high a dose can make you groggy).

Exercise is actually hugely recommended with Fibromyalgia for Pain management (so perhaps your pain after exercise is Behcet’s?). it has worked wonders in me managing my pain, although I have to be careful not to do to much because I have arthritic symptoms from the Behcet’s.

I actually find that if I don’t exercise my Fibro gets much worse - but that is just my experience - I do just gentle exercising like swimming or walking - nothing which involves bending to much or a lot of pressure on my knees or wrists!

Sorry for the essay - not sure if this is helpful!!

[Juliauk10]

Hi, sorry you're having a hard time. I was diagnosed with Behcets in the early 90's and soon after I was also diagnosed with fibromyalgia. Si I have lived with both conditions for most of my adult life. Unfortunately, in my experience, the fibro has been more prevalent & the most debilitating of the two conditions and sounds very similar to what you are experiencing. The only meds I have found to help is sertraline which is an anti-depressant often used to assist with sleep and therefore reduces the fatigue somewhat. I have learnt over the years to reduce any ongoing stressors as much as possible and to pace my daily activity. Hope this helps.

[Elamee]

Thank you. Information is inspiration. Yesterday, doctor diagnosed Fibro on top of current diagnosis of Behçets. Started some meds to calm nerves and had my first night of pain free sleep after doing a hot yoga class. Almost groggy because not used to feeling actually rested.

[ch1982]

Thank you for all your help. From your answers it does sound more like it’s the Behcet’s than fibro...I don’t have the night pain or trouble sleeping. I’ll mention it at my next C of E appointment though.

[SCMW]

Hi, it could be, I’ve posted as part of the FMS/Behcets club. I was diagnosed with FMS at 18. Returned to same rheumatologist at just under 40 and within a very short time he thought it was Behcets. This was confirmed a few months later by COE. I’ve managed to go med free with FMS but the Behcets brought me to my knees. I’m now on colchicine, which lifted the joint pain & ulcers, nortriptyline at low dose to take the edge off pain. Some other meds for other issues. Hydro and physio was really beneficial. I’m just due to follow up neck pain. I would say it’s all been noticeably worse with the Behcets, I remember saying to the GPS I have FMS and this is different. The one thing I keep going back to is there treatment guidelines for the conditions which help you understand the pathway for treatment, you can find them easily via google. Best wishes