Ankle issue: Hey gang, I've got an odd problem... - Behçet's UK

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Ankle issue

Miataman profile image
14 Replies

Hey gang, I've got an odd problem and I am trying to sort out if it is BD related or not. My BD is currently under control. I don't have any noticeable symptoms as far as i am aware of. My biggest issue with this condition was ulcers (which I haven't had in 2 years) and erythema nodosum in the ankles above the joint. I still have busies from my last flair but no noticeable inflammation. However my Achilles tendon one both ankles is killing me. The more active i am the better it is but it is very painful and seems to get stiff lightning fast. I'm wondering if this is a BD issue or a foot injury. I'm very active and fairly athletic. I chase my 3 kids around and workout 4 times a week. So it is very possible it is an injury. But my Dr won't do anything about it. I booked an appointment with a foot dr but thats a few weeks out.

Any thoughts?

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Miataman
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14 Replies
jzeis profile image
jzeis

Hi Miataman,

There's almost no information in the medical literature about the Achilles tendon in BD patients, but I was able to find a single case study of a BD patient who had an "inflammatory lesion" in one of his Achilles tendons. You can read the abstract (summary) here, and your doctor should be able to get the full article:

Takahashi A, Takeda I, Kanno T, Saito N, Kasukawa R.

Achilles tendonitis in a

patient with Behçet's disease.

Mod Rheumatol. 2004 Dec;14(6):485-7.

doi: 10.3109/s10165-004-0344-z.

ncbi.nlm.nih.gov/pubmed/243...

There are also two other articles that mention tendons (including the Achilles tendon) being thicker in BD patients than in healthy people, but they're not sure what that means in the long run. The abstracts are here:

1: Gökoğlu F, Ceceli E, Ramadan SU, Yorgancioglu ZR, Koşar U.

Ultrasonographic

evaluation of hand and foot tendons in Behçet's disease.

Arch Med Res. 2008 Oct;39(7):709-13.

doi: 10.1016/j.arcmed.2008.06.006.

ncbi.nlm.nih.gov/pubmed/187...

2: Ozçakar L, Onat AM, Ureten K, Cetin A, Kiraz S, Ertenli I, Calgüneri M, Akinci A

Sonographic evaluation of the tendons in familial Mediterranean fever and Behçet's disease.

Joint Bone Spine. 2006 Oct;73(5):514-7. Epub 2006 Mar 31.

ncbi.nlm.nih.gov/pubmed/166...

All the best,

Joanne Z.

nanajana profile image
nanajana in reply tojzeis

Thank you, Joanne, for your help to those of us with behcet's. Research is difficult for most, so you sharing your skill is a huge blessing!

jzeis profile image
jzeis in reply tonanajana

You're very welcome! Having Behcet's myself since 1979 gives me a lot of incentive to help other BDers where I can :-)

Sometimes vasculitis can cause abnormalities with the tendons and soft tissues (I.e tendons), especially painful tendons associated with auto inflammatory diseases can cause some serious damage. Also sometimes medications can exasperate these problems. Are there any other problems (crepitus, type of pain and what causes it)? I have tendons issues bilaterally as a result of another autoimmune condition. I brushed off my symptoms because I thought they were insignificant in comparison to other symptoms, don't do that. You can be sure that no other soft tissue damage is occurring by getting an MRI, US and possibly an angiogram.

muttiof3 profile image
muttiof3

I do have a lot of individual joint problems, i.e. right middle finger, shoulder joints, hip joints, toe next to my pinkie toe on my right foot... The Rhumatologist sort of snickered at me when I say the pain lasts about a year and goes away, there have been others but they went away after about a year - except the ones listed above. I also have numb or tingly areas that are sometimes painful, sometimes not. So, I am off to see a Neurologist, finally. Often I have heard, "Oh, those aren't caused by Behcets." I finally had a good response to that figured out. I say, "How many Behcets patients do you have?" When they tell me none except for me, I say, "I don't know what are Behcets symtoms and what's not, all I know is what I have." A simple definition I read is that 'Behcets is an inflammation on the small blood vessels.' (Yes, I know it's more complicated then that) Personally, I think if it has small blood vessels, it could be Behcets. After reading the comments of everyone on this site, all of the symptoms that I have had in the last 16 years I have read about here. Long story short, I have similar symptoms (especially what you said about working out and freezing up quickly afterward) I wouldn't rule anything out and keep track of everything.

Jaxxi profile image
Jaxxi

My ankles are OK if I keep moving, but seize up very quickly when at rest. They are at their worst if I have to go downstairs for something after going to bed. They are so painful and stiff I gave to use both banisters for support.

I was on colchicine for 2 years and that controlled the joint pains very well. I stopped it a month ago and the ankle pain is back in full force. This would appear to indicate that in my case it's a Behçet's thing.

Kiwichris profile image
Kiwichris

I had a thickening/nodule on my Achilles for at least a year. Was painful in the am, tight a lot of the time, you could feel the thickening. It was def BD related as once my meds were under control and sorted it went away and it is fine now. Def affects tendons I am sure and often when I have been sitting for a period of time my ankles feels very stiff as I get up for the first 10 - 15 paces - as do other joints....! HOpe it settles soon.

Hello Miataman, not sure if this is relevant - but are you quite flexible? i have tenton problems but this is because of my hypermobility (i had to have tendon & ligaments reconstruction) - if you are not sure - you could check this link:

ctcranio.com/ehlers-danlos-...

This test doesn't mean you are ill or anything but it might mean your tendons/ligaments are thin and sensitive ... plus staying active with a hypermobile body requires more stress on the body - stress doesn't help behcet ... vicious circle ...

if it isn't relevant, no worries, it was just in case, as behcet seems to often come with other conditions...

Take care, x

Miataman profile image
Miataman

Thanks for all the reply's! It would seem that several people have some of the issues I have. My Rhumatologist told me it could very well be a BD thing then kinda blew me off. This can be a funky illness. Its good to see there there is not sound issue in the studies, so i should be able to get my mobility back. I know tendon related injuries can take a long time to heal, for me I typically have BD symptoms around a flair up with months in between of no symptoms. Right now I'm in a symptom free time so I am leaning along the line of an injury.

Duvet profile image
Duvet

Hi,

I have problems with my tendons which is connected to Behcet's. I suffer with Achillies Tendonitis and have just had x-Ray's done to look for calcification in them. I also suffer with Costochondritis which is inflammation of the tendons between the ribs from the sternum outwards. Both Achillies and Costochondritis is extremely painful. The Achillies problem makes walking extremely difficult.

Dinkyjojo7 profile image
Dinkyjojo7

Hiya !omg that is really mad because I have complained of ankle pain for last 2 years and they said it was due to altered posture and my arches on my feet had dropped! They referred me to a podiatrist which I saw last week (who completely baffled me with his reasoning!) but said he believed that it was due to strong calf muscles making my Achilles' tendon too tight ! ( I think!) which is hindering my movement in my ankle and making it tighten almost to the point where I feel it needs to click to release pressure! When I walk up stairs I feel I have to walk on tip toes because if I put my foot flat on the step the pain is excruciating ( and I'm not a wimp honestly!) he again said it was unrelated to bd but then went on to say he wasn't familiar with the disease and asked me to explain the symptoms of bd!! Anyway he discharged me with some excersizes to complete and to invest in a good pair of trainers! Needless to say I haven't seen any improvement yet!

Love and hugs

Jo x

suzannenmike profile image
suzannenmike

This is really an interesting point. My rheumatologist (who works with the vasculitis team at my hospital) is convinced that BD inflammation has caused my left foot to almost turn over, and I am facing a triple fusion operation to correct it. She thought that BD had inflamed my tendons. I remember there was a period of around a week when I could feel the tendons in my foot, perhaps tearing is too strong a word, but they moved! I have been down the orthotics route, but insoles and ankle braces did not relieve the pain.

I find it alarming that doctors make so many different decisions, especially those who have no knowledge of vasculitis, let alone Behcet's Disease.

Miataman profile image
Miataman

For me I'm leaning toward Achilles tendinopathy

patient.info/health/achille...

BD wise I have very low involvement at the moment. I have 1-2 flairs a year and am managed with mu current treatment. I'm stating to really think this is a sports injury after doing some reading.

Miataman profile image
Miataman

So I finally found a good foot Doctor. After some good xrays we found out I have an accessory bone in both of my feet. This bone mixed with the wrong footwear causes stress on the Achilles tendon. Which can bring on inflammation. For normal people this is a matter of changing shoes and moving on. Since I have BD this will be an ongoing issue it would seem. He gave me some tips on how to buy the right shoes and how to stretch properly. So I changed shoes and added the stretches to my morning routine. I still have a little pain here and there but all in all it is MUCH better than it was. He said being mobile with help, which is why it is so bad in the morning and better during the day.

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