I have an issue that whenever I exercise (raise my heart by walking or in low impact gym sessions) my hands puff up. The muscles and soft tissue goes really ‘thick’ and I cant bend my fingers. Some days I wake up like this too. They are like balloons! It goes down after 39 minutes or so. They also turn extraordinary colours. They are always purple when it happens and covered in areas of white mottled spots. The palms are crazy. I suspect I have reynauds as they are like two dead fish when the temperature changes. I also see stars sometimes when it happens. I feel like my circulation is out of control.
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VickiOliver
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No I’ve had a resting ECG but that didn’t show anything. I also get a pain in my heart which makes me freeze and I can’t catch my breath whilst it’s happening until the spasms subside
Behçet’s mysteries! I guess the underlying issue is vasculitis so blood vessels can be inflamed anywhere in the body. That includes teeny vessels of the kidney and the heart which can affect fluid balance and BP and heart function and cause oedema (swollen hands and feet). Maybe a clever cardiologist could work it all out for you?
I had weird symptoms a few years ago with breathlessness on walking upstairs / exertion, and my heart rate was really fast and I felt dizzy and had to stop/ lie down. But at rest everything was fine so I probably seemed a bit loopy to most of the doctors!! All started with a flu like illness which they think triggered Behçet’s flare. All improved when my steroid dose reduced once stabilised on Infliximab.
Sounds like a possibility. I get very breathless and dizzy also. I had the ECG because I get a constant flickering in my eyes. It happens when I look down more. Maybe it’s all related maybe it’s not?! I also have hyper mobility which I think is Ehlers Danlos. Maybe it is also related to this and POTS? Too many mysteries and other than the centre of excellence no one looks after my conditions. My local rheumatologist is useless!
Our daughter also has Behçet’s and is hypermobile. We’re both seen st the London C of E.
Ehlers Danlos patients can have some heart issues with the different types. I was given a POTs diagnosis but as I say it all got better once the Behçet’s was under control so apart from drinking a huge amount of water and having more salt to keep BP up, I did not discover much more!
That’s so interesting. I’ve never had a diagnosis of EDS but score 9/9 on the beighton scale. I have other things like thin and translucent soft skin that bruises easily and am covered in ribbon stretch marks. I have a hiatus hernia, bladder issues and a mild prolapse. I also get dizzy standing up or arms above me head. I have lots of joint issues and scoliosis.
Lots of those symptoms would fit with EDS. They can genetic test for specific types of Ehlers Danlos so maybe ask to see a specialist in that field. I am not sure if the best would be via Rheumatology as it is a connective tissue disorder, but here is one doctor linked to the Royal London Barts NHS hospital Trust here (where the Behçet’s Centre of Excellence is based) : Dr Qasim Aziz, PhD, FRCP, Neurogastroenterology.
I too have EDS having, the hypermobility or Joint hypermobility syndrome, has now been incorporated into the now 13, I think I am right, types of EDS, I was diagnosed separately with mitral valve prolapse and regurgitation and then told this was part of EDS, then the gastric issues associated with EDS, but then I get conflicting associations with the Rheumatologists who cannot differentiate between Behcet's and EDS because both have some similar issues.
Your hand colouring looks like my skin on lots of my body, I have not been diagnosed with Livedo reticularis, which is also associated with Ehlers Danlos but mine looks like this, it consists of a mottled reticulated vascular pattern that appears as a lace-like purplish discoloration of the skin, picture here looks like my arms and legs, I do not think I get any swelling like you, I would write all this down and discuss with your rheumatologist, I originally saw a rheumatologist who specialises in joints now I see a vascular rheumatologist who has a much better handle on my body and the associated symptoms of both Behcet's and EDS:
Thanks Gillian. I think we’ve spoken before. Which rheumatologist do I ask? At the CofE they are only interested in Behcet’s. And my local rheumatologist says every time ‘I don’t understand or know about Behcet’s or hyper mobility’. For almost everything that happens I’m stuck in a cycle of everyone not knowing why something is happening and then blaming the other condition.
This also happened when I get an enormous amount of fluid in my ankles. My physio who is a hyper mobility expert says the joints are hot and red and classic auto immune and no mechanical fault. She thinks arthritis sets in where the joints are weak. CofE says it’s a tendon issue so to have an ultrasound to confirm. The ultrasound confirms it’s synovial from the joint. Then I give this info to CofE and he says it can’t be because every time they’ve done my bloods ( once every 6 months and never whilst the swelling is there) that there’s no immuno response. He ended up saying that all my joint issues are mechanical. I explained that in the past I have had flare ups with corresponding blood results (this is why I had a speckled positive misdiagnosis of lupus). He says the past records didn’t matter! I’ve asked to be referred to the hypermobilty part of rheumatology at UCL but haven’t heard positive things
I think I need to change local my rheumatologist. I’m also going to get my gp to do the blood work the next time my ankles flare up just to check. I don’t want to argue with doctors but I feel like I’m stuck in the middle of people passing the buck and not getting to the bottom of things.
Last time I was in clinic in London two of the consultants told me two very different things on my bone density results one saying that I had worryingly low bone density and the other said it’s only in certain areas so don’t worry!
When doctors can’t agree or only look at the bits they are interested in what do us patients who don’t fit the mould do?
Encourage one of these Rheumatologists (or their trainee doctors) to write up your case as a “case report” so doctors can see the patterns then share their experiences. That is sometimes the way for the experts to work across the disciplines to share knowledge and identify patterns of disease eg cardiology and rheumatology. If they present it at a Behçet’s or Rheumatology conference it would get doctors talking where they have a space to think and discuss ideas.
The specialist I see is a Rhuematologist who specialises in Connective Tissue Disorders, several areas of medicine deal with connective tissue disorders but a rheumatologist CTD I gather is the specialist for conditions such as Behcet's, Lupus, RA, Sjogren's etc. She has a much greater understanding of me and what is going on with me and I can talk to her which is a great help.
Really not great you having to be in the middle of all this and they really should know better, what I would do in your situation is get everything in writing and present both parties with each others facts, I would supply each of them each others telephone numbers and I would explain just what the differing prognosis is actually doing to you.
Get all the results from your blood works and copies of all your scans on CD, copies of your clinical letters, I again applied for my records recently and they were all here in 10 days, had to fill in data protection forms first. I use these records at my meetings and it gives me the correct information. Every time you are about to leave any of your hospital appointments ask for a copy of the clinical reports, some are OK others don't don't like being asked, I was told at my recent Ophthalmology appointment and Oral and Maxillofacial appointment there would not be much in the clinical report... so I replied but I still need a copy for my records so I can see what you have written about me just in case I need to be referred again and as proof of what has been said, the Ophthalmologist said yes but any consultant can look at your records and I just replied only if I am living in this area, when I had a recent (2018) hidden inguinal hernia operation at St Mary's, London they could get no access to my records held in Scotland, lucky for me I had already requested copies of CT scan and reports. I also get copies of all my tests carried out at my GP practice.
I have got so much much firmer as the years have passed me by I just will not have these people play around with me or my emotions because every time they do I am the one that suffers. It took all these experts over 40 years to recognise my Ehlers Danlos and Behcet's, and the Behcet's was not picked up by a rheumatologist even when presented to him with all the facts and pictures, this is nothing to do with Ehlers Danlos... but what could it be, I don't know he says go and see a gynecologist and a dentist, I replied have already been there... so I just hobbled away and carried out my own extensive research and presented this to a GP 6 months later who literally discounted this until I showed her my research and pictures and charts of my ulcers etc. And then had the cheek to say do you want me to refer you to a specialist who knows about Behcet's! and then went on to apologise because it was back to rheumatology... so for 6 months I was petrified waiting for my appointment thinking I would get placed in front of the same rheumatologist, thankfully for me I didn't and the lady seen knew all about Behcet's but after a year she had to move me to the Rhuematologist who specialises in Connective Tissue Disorders because nothing she suggested was working, and since the move to the Rhuematologist CTD I have been taken more seriously and we are trying to work through my conditions including now at last my ankles which are driving me mad at the moment, the swelling around back bottom of the ankle bone and the pain across the ankle/leg joint and up the outside of my legs which I feel are all fluid in tendons, I could draw lines around the swellings, this is never all over. I want to know why this is happening and I want x-rays in multi positions to look at the whole of my feet and ankles, I had an MRI in 2016 but this was done in a brace and at the time I had very little swelling, not sure if like me yours comes much later on in the day, so no good doing any imaging early in the day, it just showed little amounts of fluid in the tendon sheaths... anyway my Rhuematologist is first going to speak to Musculoskeletal Radiologist and see what her thoughts are and then likely referral to a foot and ankle specialist... I want to know one way of the other why this is happening and can it be treated...
Also Gillian that is exactly what I get on my skin and I also get it on my legs and feet. It is identical and is almost always accompanied with swollen hands and feet.
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