Here’s a question: So good people. Something I... - Behçet's UK

Behçet's UK
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Here’s a question

So good people.

Something I have been trying to work out but cannot find the answer.

Is behcets arthritis or can it lead to that?

I am suffering neck, wrist, hand/finger, hip and foot pain. Bought on by the smallest of exercise.

Swelling in these joints appears to come with it too and it’s comes also when I rest.

Thoughts?

Thanks

C

21 Replies
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If you’re seeing swelling then yes. Fibromyalgia can also cause that kind of pain. I have problems differentiating between my two. However when there’s swelling I know it’s Behcet’s. At least for me...

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Arthritis is the medical term for inflammation of the joints. So, yes.

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Love the name btw. 😉 x

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Ditto yours! x

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😀

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I’ve been advised by my Rheumatologist and from the reading i’ve done, that the arthralgia I have (mainly wrists, hands, fingers, ankles and feet but in the past knees, elbows, hip and lower back) is not causing any permanent damage which is how it’s different to RA or OA.

I’ve never had any X-rays to check for damage though!

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I too have issues in all of these areas. I also have fibromyalgia and primary joint hypermobilty/ EDS. It ends up being impossible to differentiate between them all and each medical expert blames the other symptoms.

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I too have Ehlers Danlos which affects all these joints too, the only way I can differentiate is know whether I have been doing something to over extend my joints, if not then I blame Behcet's for the joint paint and swelling. I too have been told that having Behcet's and EDS does not have any long term damage like RA, and then after x-ray I got told I have RA in one of my big toes and OA in the other big toe... so how do they know if they are not continuing to check us as we age...

I get joint pain and swelling from doing nothing too like you, it really is a weird situation not knowing what's what... I even got told by my previous rheumatologist that she thought I may have fibromyalgia and this one says not, really a fine line with how they think.

And they are still trying to fathom out why my muscles are tight all the time and worse when I wake up every day and stays with me all day in a lesser degree, I even wonder is this why my joints are painful and swollen... I ask questions and they don't know the answers, now Neurology looking at me to see if they have answers...

It is frustrating for us all having complex conditions with differing and sometimes vague answers from our specialists.

Hope you can feel some improvements soon.

Gillian

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I know this has mentioned before but what are the symptoms of EDS? I wonder if I have a combination of problems? Sorry to hijack this thread. Lesley

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EDS is a group of connective tissue disorders which has 13 different subtypes and usually you are assigned to one or more of these, it might be helpful for you to see the 13 subtypes and what it says about each one:

ehlers-danlos.com/eds-types/

Hope this helps.

Gillian

P.S. hope you are still feeling better with your new medication.

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Thank!

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Arthritis is a generic term used to describe all auto immune/ Rheumatic/ auto inflammatory/ joint and other diseases. Behcets is a form of Arthritis.

Behcets can cause pain and swelling in the joints and tissues but it’s not usually destructive in the same way that Rheumatoid or osteo Arthritis is, that is it doesn’t erode bone or tissue and cause permanent damage.

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Behcet’s usually favours the knees but it can also affect the elbow, ankles, wrists and fingers.

Do you have any other signs of that Disease such as oral and ge oral ulcers or eye inflammation?

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I have indeed, I have the neuro variant, so still get ulcers both oral and genital, i currently have uveitis and I have intracranial hypertension along with trigeminal neuralgia.

What is new for me is the joint pain. My pin has always in the main part been my nerves but I have recently begun swelling in my joints with severe pain when sitting for a short time or moving in small amounts.

I wondered if I should refer to a rheumatologist if this isn’t behcets but it seems it’s part and parcel.

I never thought behcets was arthritic. Had I known that it would have made more sense as I have a strong family history of arthritis along with cataracts and glaucoma.

That’s the dilemma - is the joint pain just part of behcets that is normal for the condition without neuro it is it arthritis in its own right.....

Take care

C

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It can be part of it in some patients bit not part of the diagnostic criteria .

However the oral genital ulceration and uveitis is strongly suggestive of that diagnosis. Who are you seeing regarding the Behcet’s

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Mr Ellis at Royal Stoke. Although I haven’t seen him for over a year now.

I have private medical so referrals are in hand to move in that direction to get some further assistance and scans if needed.

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Hi and good luck, your combo of symptoms is very similar to mine, and Ive got dx of behcets with sero negative rheumatoid arthritis, and osteoarthritis which has led to ankle fustion, foot fusion, and two hip replacements, Ive had optic neuritis due to BD, the ulcers inside and out, and the exhaustion,I dont have a rheumatologist as hosptial hasnt had oe in post for last four years, just stand ins, so Im fighting via go to get referral to a behcets centre of excellence at City Hospital Birmingham. Seems likely to get refused as its an out of area referral and our CCG dont like those. In past Ive found Behcets UK (formerly Behcets Syndrome Society) a fount of useful and helpful advice and info. Id push to get a referral to a centre that know what they are doing, Ive had some real idiots treat me over the years and they are all doing it with smoke and mirrors, get an expert!

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Do you have a confirmed diagnosis? Looks like you should have.

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Yes I do for neuro behcets.

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If you have private medical insurance I would not have an MRI scan as it sometimes does not show anything. The best one is a SPECT scan which looks for areas of hypoperfusion

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I haven’t come accross these before?

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