Behcets and fibromyalgia/chronic fatigue sympt... - Behçet's UK

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Behcets and fibromyalgia/chronic fatigue symptoms?


If you have behcets plus fibromyalgia/chronic fatigue, can you describe your symptoms? I am having all sorts of issues and while I’m sure some of it is from fibro/cf, I am not sure how much is one versus the other.Has anyone gotten relief from their severe fatigue and lack of energy, as well as pain and intolerance to activity, by changing overall immunosuppressive medications? Does anyone else find that they have significant chest congestion with flares that then turns into a chest infection? The tighter my muscles in my chest become, the more thick phlegm I produce. Using my inhaler ( I have asthma) brings on severe coughing with sputum that takes an hour to hack up, but only 1-2 hours after inhaler usage. These are not just asthma symptoms, but seem to correlate directly to the disease and fibro/cf activity. Desperately looking for some understanding of what is happening......

8 Replies

Hi, I too have Fibromyalgia and CFS and find it hard to understand what symptoms are from what. I don’t have the chest problem like you but I do get a sore throat, extreme pain, aches, fatigue, brain fog, clumsiness etc if I slightly over do it. I have to sleep in the day or my symptoms get worse. It is so unpredictable that it is very hard to get in a routine.

They have never tried changing by Behcet’s medication as they believe all the above symptoms are my Fibromyalgia/CFS.

I got some relief for a short period when I was changed to Gabapentin for the Fibro.

Any form of activity makes me worse and I used to be a personal trainer so this change for me has impacted massively on my mental health. X

Frogge in reply to Doryjay

I have both just like you and my symptoms correlate exactly with yours. I do not get chest pain either. However, I get brain fog, clumsiness, sore throat, extreme aches in both muscles and joints, and extreme fatigue. I also REALLY need a nap every day to function. I am an elementary school teacher, so this is not something I get most days when we are not in covid mode. My doctor seems to think these are all fibro except possibly the joint pain. I can't take any of the drugs for behcets as I have had a reaction to them every time we start. I have taken gabapentin for 15 years and it helps but is starting to cause new side effects. I also take tramadol every night due to the pain. I can't sleep without it. I also have to take Seroquel as a sleeping pill to even fall asleep. I am also starting to gain weight because of the inactivity and I have always been on the skinny side, so this has really affected my self-esteem. I hate it and it seems there is nothing I can do. These are two rough diseases. :(

Doryjay in reply to Frogge

Hi, I sympathise completely with you. I was an associate senco and head of a integrated resource, but had to leave the job over 2 years ago know because I was making myself so I’ll I wasn’t recovering. I never slept and literally run myself to the ground.

I have found that certain meditations work for falling asleep. I’m currently paying for a yoga app which has a great sleeping meditation and day time relax one.

They really are difficult illnesses and unless you suffer with it no one really understands. The pains I suffer with everyday, just from the slightest movement sometimes, are horrible and it gets me down. My mental health has really suffered.

Take care x

Willowmina in reply to Doryjay

Can you try gentle yoga as movement? To oxygenate your body? you eat anti inflammatory food.If I don't.have physical movement or anti inflammatory diet I get so sick

Doryjay in reply to Willowmina

Hi, I have tried gentle yoga and sometimes I manage okay but after a couple of sessions I get completely wiped out.

I have thought about food and it’s affects but have been told mixed things. What do you avoid?

Willowmina in reply to Doryjay

Hi...I avoif lectins. If you Stevrn Gundry on Youtube, he talks about the Plant Paradox diet. I think it really works.

Also have a look at the Buteyko breathing methodx

Hi, I have both. I was diagnosed with FMS at 18 and Behcets late thirties. I experienced a demonstrable worsening of things like joint pain ( I couldn’t walk) and this only lifted when I went on colchicine. I also had sinus and phlegm issues when I was younger along with fairly regular sore throats. I have not had one since I’ve been on colchicine and also came off dairy. The ulcer activity and skin blemishes were much more pronounced with the Behcets. Although in truth I think I’ve always had both. Hope that’s helpful to share.

I don’t want to add to this sorry list of woe but as everyone else I get everything except the chest pain. Though I have a recurring stomach ulcer if I don’t take the Omeprazole, that definitely causes chest pain and could be Behcets related.

The Fatigue is awful, difficult to explain to people who don’t have this thing because they don’t get it. I also have to sleep every afternoon without fail.

The joint pain and muscle fatigue is hell. I just can’t do much, simple as that. It’s really tough because I’m a parent and I can’t always be there for my children.

All the best to you 👍

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