tips/advice to help with joint pain due to 'possible' Behcets

Hi everyone

I was recently told by the rhuematology team that I had possible Behcets. I suffer with mouth ulcers (which I would describe more like blisters), genital ulcers, headaches, unexplained anxiety,fatigue, weight loss, trouble sleeping and joint pain, I also get a share pain in my right side which when it flares up it hurts anywhere from under my right rib down to where my ovary would be. The worst symptom for me is the joint pain as it is in my hands, elbows, hips and knees (im 27 years old) this is followed closely by the fatigue which will just totally wipe me out of energy and I have what can only be described as brain fog.

The Behcets specialist told me he didnt want to label me with behcets yet but im unsure why. I have been put on Colchicine and have been taking it for about 7 weeks but im yet to notice a difference. I also take amitriptyline at night to help me sleep. I have graves disease too but have recently had a thyroidectomy and my thyroid levels are normal so I know this isnt adding to the joint pain or other symptoms.

Im just interested to hear what treatments can help with joint pain and also how long it took people to get a definite diagnosis of Behcets? Also do people suffer with similar symptoms to these.

Sorry for the long post!

Thanks for reading

:-)

4 Replies

oldestnewest
  • Hello I was just diagnosed with Behcets after a long time suffering. Its my joint pain which is the thing stopping me fullfilling so much in my life. I have found that using Tiger Balm liniment oil helps my joints and also meditating helps the spirit fight the pain. Also pain killers. Check with GP first about the tiger balm is ok for you to take. I have found it a godsend. Hope this helps.

  • Thanks for the reply :-) im yet to find a painkiller which helps. I have been given tramodol but im too worried to take it due to the side effects! Ill ask about the tiger balm. Where do you get it from?

  • I was diagnosised with Bahcet's about 4 years ago (i am 30). I have had a long history (since i was 2) of joint pain especially my knees, prednisalone has usually controlled my flares. Between these flares i have been controlled on codiene and meloxicam. Unrelated I now have a back injury due to a car crash and on high dose codiene, amitriptyline and gabapentin, luckily these have kept my joint inflammation under control. But i have had tramadol in the past and had no problems/concerns at all. I think if the doctor has prescribed it for you the benefits must out way the side effects, if anything it might help you get comfortable enough to sleep. Have you talked to you doctor re your concerns? I also take high dose omega 3 oils and tumaric for their anti-inflammatory properties, vit b to boost energy levels plus vit c and zinc to help my immune system. I also find deep heat, muscle rubs of benefit when my joints are particularly painful. Hope that helps a little.

  • Hi

    Thanks for the reply. I did speak to my rhuemy about Tramodol and said I was worried about the side effects as I have two small children and it says you can hallucinate. They told me if I did it would only be for a few hours but I still find that too frightening to try them even though it might not happen!

    I have had predisalone tablets and they didnt help. Also had three injections of steriods they tried me on a different one and it did help but made me very emotional. Also I had three injections in 6months the rhuemy nurse said I was coming to my limit on how many steroid jobs you can have.

    Im just wondering how long Colchicine takes to work as I know alot of the tablets take a few months? My next appointment is in august so im guessing by then they should know if Colchicine is a benefit.

    Im currently suffering with what feels like Costochondritis (had it before) but last time it was on the left side and this time its on the right but low down like bottom right rib/upper right abdo.

You may also like...