Has anyone experienced these symptoms before?

[jaquarius]

Hi all! New to this forum, great to see this community for this horrible and widely misunderstood condition.

I've been diagnosed with Behcets for almost 4 years now and am in my mid 20s having dealt with symptoms all my life, and in the past 2 years or so I have had random bouts of stiffness in the joint of my big toe (on either foot, the bit where it juts out, the elbow of the foot if you will) but usually it subsides after a few days.

I'm having a particularly bad episode, following two weeks of incredibly big and painful mouth ulcers and erythema nodosum on my opposite leg to where the foot swelling is. The pain in my foot has now grown the entire side of the foot, and has now gone up to my calf, to the point where it's painful to touch. I'm wearing compression socks and its still incredibly stiff and difficult to move.

I saw an emergency doctor and was prescribed naproxen, and have reluctantly bought a walking stick, am going to look into being registered disabled and looking at assistance with helping pay for my prescription as this is affecting my daily life quite seriously when I do have flares. The doctor thinks it's Behcets, but says I should rule out gout and arthritis too. I'm just wondering two things:

1) if anyone has experienced this similar stiffness in their leg and foot, i know joint swelling is a common Behcets symptom but not read much on this and the pain travelling to other areas

2) how their experience has been on naproxen, how quickly it takes to kick in. i've have to take 3 tablets a day for a week. also been prescribed pills to avoid gastritis and stomach ulcers

Any help would be greatly appreciated. Thank you! (also if you live in London I am looking to set up a Behcets support network for the city, not sure if this already exists)

[Icefire]

Hi Jaquarius,

I have had Bechets since age 14 and have now just hit 40. We are all different and you should deal with it how you feel is best. For me the medicine is not the answer except for emergency to calm a flare. I had a particularly bad flare two years ago with joint swelling as you describe. Commonly in my knee and ankle but once in my hand which started in a finger and continued to spread to my hand and wrist. A gluten free diet has worked wonders for joint swelling. My joints have been in remission since giving it up apart from when I glutened myself by accident! I also can't tolerate dairy or eggs as they also trigger symptoms. I have to be careful with diet and recently realised a lack of iodine (dairy and eggs our main source in UK) may be effecting my thyroid and making me feel exhausted.

I was hospitalised with 'Lady ulcers' age 14 but that was long before google so no one had a scooby do what was wrong. I suffered ulcers badly till mid to late 20's when I figured out sugar and lack of veg was making them worse.

I'm well enough now to hold down a stressful job and look after my young children. At one point I thought I might have to give up work.

Your so young I'd hate for you to give into a 'lable of Bechets' and let it ruin your life. I hope the following podcast link is useful. Two GPs using lifestyle medicine having a conversation relevant to us.

drchatterjee.com/how-to-tra...

If you don't want to follow a random link 'Google' Dr Chaterjee and look in the recent podcasts. For Dr Ayan Panja.

P.s for now I still have mild symptoms but it's more like the odd mouth ulcer or erythema nodosum spot when I've eaten something I shouldn't have.

Good luck. X

[Matillymoo]

Hi Jaquarius, your joint pain sounds similar to what i experienced in my 20s. I had various symptoms since my teen years but was misdiagnosed for about 30 years til i finally got the right diagnosis last year (im 38). Currently my worst joints are my hip, knees, ankle, toes, elbows, wrists and smaller joints of hands. My jaw was in a shocking state and i had a total replacement of the right TMJ last year which has given me a lot of relief.

Prior to being diagnosed I tried a lot of physio, different medications, and went down the alternative therapies and diet path, none of it held off the disease for me. But that is just my experience. My doctors have me on TNF Inhibitors now and Methotrexate and along with some simple analgesia for pain relief (flare ups still happen) and cortisone and numbing creams for ulcers, I am managing ok. It is a horrible disease, and im sorry you're going through this. I would recommend getting in touch with Behcet's UK and maybe get a referral to the Specialist Centre. Im in Australia and plan to visit the centre one day, but im very happy with the plan from my current doctors. It took a loooong time for me to get here though. Maybe in your situation you can get onto the best treatment earlier and have an easier disease course! My hope for you ❤️

Oh and naproxen never touched the sidrs for my joint pain. I went through meloxicam, celebrex, then due to gastrointestinal issues and discovery by my rheum that it was something autoimmune i got started on biologics and Dmards in 2018. Your treatment plan will probably look different. But it sounds like the naproxen isnt cutting it! Good luck and all the best 💖

[012703060610]

hi there, am new to this community. Very similar with issues in my youth. I managed it mostly with Advil or aleve. My oral and vaginal sores were horrific. I got COVID very bad early 2020. I am 43 now. This brought behcets out in full fashion as well as relapsing polychindritis which is also rare. The latter attacks cartilage anywhere in body. It’s hard to say which diseases causes what as we all know overlap exists. We did learn that I cannot take those meds (nsaids) as it causes awful nose bleeds. I cannot take narcotics as my stomach is paralyzed and would only make worse. If your aleve is working, that is amazing. I am on methotrexate and prednisone. I came off for a surgery and all issues were present. It should work within 30 mins. If this is not enough….the next grade up is a prescription of meloxicam. I have for emergency flare but will cause nose bleeds.

As for stiffness, that is something that popped up when not on meds. In particular it is my heels and feet. Just not sure which disease that symptom belongs to. So no immunosuppressive for you? I hope it stays that way. If you can continue to manage without a ton of flares and extreme treatment, I think you’ll be in good shape. For oral sores I do use a steroid mouthwash which helps clear things up a bit sooner.

[gillianTS]

I have pain in both big toes, swelling and pain in the outside rear of both ankle bones, like little eggs that increase each day and subside at night but not fully, swellings above ankle bone on the front outside legs muscle, these are small pocket areas which also swell up under surface and reduce slightly at night.

I have joint pain in all major joints, it has been there most of my life and sadly I had to deal with this for decades before I eventually was referred to a rheumatologist who attributed my conditions to Behcet's, but also a diagnosis of Ehlers Danlos type3

Things I have tried to use to help. On the big toes I had what appeared to be bruising so I started using arnica cream and the bruising has all but gone it does reappear when not used. I soak my feet and ankles in warm water which I have added epsom salts. Use magnesium oil or spray on my joints. Ibuprofen gel, capsicum cream anything that I think just might help a little. Had lots of different drugs but nothing has made a real difference.

Stretching every day helps and certainly improving feet, ankle and leg strength is good. Inactivity makes life much worse. Soaking in a bath with epsom salts helps a bit.

Consider if you might possibly have Ehlers Danlos and if you are over compensating your joints, this is what I have done my entire life and not realised until very late diagnosis. Look at yourself and check out your stance, how you walk and move.

Consider seeing a podiatrist, it might be your feet are the problem and radiating issues right up your feet, ankles, legs and pelvis.

Make stretching twice a day a must, make sure you stand correctly when exercising it really is important. Incorporating toe, feet and ankle exercises, ankle strengthening, balance, foot and leg placement, pelvis and stomach muscles are also important. Start small and build up gradually otherwise you will suffer for weeks if not months...

I wish I had been told about my conditions when I was younger, I could have made so many adjustments to how I carried myself years ago but never knew what I had until it was too late and the damage was done and it was only then referred to a consultant I found out, but sadly not much helps now with long term relief.

Don't give up, suggest to your consultant a referral to podiatry if you think your feet could be the issue.

[jaquarius in reply to gillianTS]

thank you so much this is so helpful. i have a rheumatology appointment in may so hoping something can come from that. i also just find my joints are quite achey especially my back and knees. i have flat feet so have always had problems with my feet! but a podiatrist could be good to go see.