How do you describe your pain?

I have been struggling without a concrete diagnoses for a little over four years now, but my doctor is hedging his bets on Behcet's. I don't have any eye or gastro symptoms (yet), which is why he's hesitant to make it official. However, despite clear Behcet's symptoms (mouth/genital ulcers), I'm worried he might be going down the wrong path based on the pain aspect. Everything I read about Behcet's suggests my pain should be in my joints, but it's not. I have pain all over. It feels like every nerve in my body is firing; I ache all over, it hurts to even touch my skin, and it's my muscles more than my joints that cause the most pain. It seems more like how fibromyalgia pain is described. Except fibro doesn't come with ulcers!

Anyone else here experience pain like I'm describing? Not that Behcet's is an easy diagnosis, but I feel like my doc might be ignoring significant differences in pain presentation because of my other symptoms. Unless widespread fibro-like pain is also common in Behcet's, but just not the literature? Help! :)

4 Replies

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  • I was diagnosed with Behcet's Disease almost a year ago by a biopsy of mouth ulcers by my dermatologist, who then had me see my rheumatologist so he could 'take charge' of my treatment. I was then diagnosed (this is after being with my rheumatologist for many years, as I also have Sweet's Syndromes and Osteoarthritis) with Fibromyalgia 3 months ago.......after many different tests to rule out other things. Colchicine (for Behcet) and Cymbalta (for Fibromyalgia) have helped keep the ulcers at bay. Cymbalta has helped immensely with the overall achiness, joint pain, and severe fatigue. I hope this helps! Hang in there and keep asking questions to seek the answers you need! Only YOU know how you feel, and it is imperative to have a great rheumatologist who LISTENS to you! Good Luck!

  • gastrointestinal behcets is actually very rare and not a common symptom at all and eye inflammation is less common outside of turkey and japan, so a lot of people these days dont have it. it took me nine years to have eye inflammation, gi symptoms and joint pain. i started out with just canker sores and genital ulcers.

  • Hi I have had the same problem for many years the hospital wont except the GP's idea of Bechets. I take imipramine at night which is supposed to help relaxation and hydroxychlorquine for the ulcers. I now manage best I can, rest and sleep are important I'm lucky as I don't start work untill 11:00 am by which time my creaky bones are moving. When it flares a lot I have to ignore the housework etc and get through it with painkillers I recently had a headache for 5 days which nothing would shift so I think its all trial and error I have refused some medication as I don't like the idea of side effects. Hope you get some relief soon.

    Just wanted to say all of your symptoms I also get so you are not alone :}

    ps its 5:00 am cant sleep mouth ulcers rule yeh

  • Hi there, have you looked at our many factsheets on Behcet's here: Perhaps print a couple and take to your next appointment. Best of luck in getting the correct diagnosis and the right treatment.

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