EDS? Where do I go to get diagnosed? ... - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK
2,286 members742 posts

EDS? Where do I go to get diagnosed? PS I'm new to this forum.

vfriend
vfriend
12 Replies

I was diagnosed with fibromyalgia in 2008. For the last year or more I've been putting the puzzle pieces together and am wondering if I have EDS hyper mobility. I can't stand for too long, my hips click as I walk and I can bend in most of the ways on the EDS chart. I mentioned it to my primary care doctor who recommended what he referred to as a great rheumatologist. I spent days writing and rewriting my symptoms to make it as short and clear as possible because I didn't want to waste the doctor's time. The doctor looked at me, my paper and said he would rather hear it from me! I almost started crying. Then he said he has no way to diagnose EDS because it requires a genetic test and that was that! He scheduled me for a bone density test and I later received an almost $500 bill from the doctor's office. Talk about wasted money! Does anyone have any ideas? I've wondered if it's worth getting tested but at times the pain is so bad and crippling that I think my body is dying and I'd like to know what's going on. Any help would be greatly appreciated.

Sincerely,

Vicki

12 Replies
oldestnewest
madmum1994

Hi I am sorry to hear your suffering,

Please check my posts for remedies I am sure they will help,

As for getting Diagnosed!!!!

Is it worth it NO, no one can help, no one knows nothing etc... Its not very good.

EDS can be broken down into hyper mobility and something a bit more,

Personally, I have had a ridiculous amount of miscarriages, 5pre-term children with one dying. Chronic pain/fatigue, Dislocations and sub laxations constantly, plus bowel and bladder problems, It really does at it worst effect every connective tissue in the body. However there is hope. Change of ideology and lifestyle.

I no longer take pain medication and was on the highest stuff they could give...

I nearly died..

Please look mat what I have posted previously.

Take care :)

Reply
Kate37

Certainly sound possible that you have eds with your symptoms. Most doctors have very poor knowledge of this. Sadly even the rheumatologists who should know often don't. You don't need genetic testing as it is a clinical diagnosis based on your symptoms and physical signs. I don't know where you live but if you can get to London professor Graham is excellent at the hypermobility unit at the hospital of St. John and Elizabeth. He's private but well worth the money. Good luck. With the right treatment I have massively improved in my quality of life.

1 like
Reply
vfriend
vfriend
in reply to Kate37

What kind of treatment if I can ask. Oh, I'm in the states so London is unfortunately out. What kind of doctor should I see?

Reply
Kate37
Kate37
in reply to vfriend

It is a rheumatologist in the UK, but here most know little about it and you need one that has a special interest in eds. is there a support charity in America that could point you in the right direction. The HMSA does that in the UK. Here I've had specialist physio to strengthen muscles to support my joints, medication for POTS which can be associated with eds. I also have gastric problems associated with eds for which I'm now on the low FODMAP diet, take various supplements including probiotics and a VitB co. The diet has really helped with the brain fog and fatigue. I have accessed this privately as there is little available on the NHS.

1 like
Reply
Janett01
Janett01
in reply to Kate37

Hi Kate37. I have a question for your. I have DNA tests pending for vEDS, but now going to see a cardiologist to confirm my hEDS. I found the same thing. A lengthy process to get diagnosed and no straight answer. I live just outside of London. Is the best person to be referred, to by my GP, a cardiologist on the NHS- to be diagnosed? I know you mentioned above Prof Graham. If my GP wants me to see a cardiologist my fear is that I will be a ping pong ball between specialists who has no idea about EDS. I'm after a physio with EDS knowledge too.

Reply
Kate37
Kate37
in reply to Janett01

Hi

It depends how good the cardiologist is. It’s worth trying incase they are good, but for my family (myself and both kids) the biggest turning point was probably the hypermobilty clinic in London. The physios there were fabulous. I tried to see it as investment in my long term health. Good luck

1 like
Reply
bombsh3ll
bombsh3ll
in reply to Janett01

Where did you get genetic testing for vEDS in the UK?

Reply
vfriend

Thank you both so much! I think I was so frustrated and upset with the doctor I saw that I was clueless to what direction to move in. I do see a pain management Doctor. I hate to complain or let anyone see me in pain but after my appointment with my pain doctor I came home and wondered if I'm dying because I can't understand how my body can hurt so much and not be dying. I find it hard to believe fibromyalgia causes this much pain. Thank you both so much!

Reply
Jay66

'wondered if I'm dying because I can't understand how my body can hurt so much and not be dying'

Yes - been there - I couldn't believe how bad my body felt in my 40s having been endlessly fobbed off with one silly diagnosis after another (stress was one of them). Eds often seems to be misdiagnosed as fibro, or diagnosed after fibro, but eds causes system-wide problems in addition to whole body pain.

Diagnosis of eds is worth pursuing, in my opinion, just for your peace of mind, but then in UK it doesn't cost anything. It probably won't help at all, because you will still have to explain your condition to doctors. My rheumatologist couldn't get me out of the door fast enough once he had diagnosed eds, because he said there is nothing he can do for me other than give me strong pain meds, a scan for OA and a referral to a physio, until my joints start to break down.

Genetic testing won't help if it is eds hypermobility type as there is no specific allele currently known to cause eds hypermobility type. Genetic testing will only help identify the other eds types. Some people have cross-over eds hypermobility and classical ( eg. I have soft velvety tearable skin in patches and big scarring), so perhaps genetic testing would help them. Additionally, many eds-ers have auto-immune problems too. If you haven't been tested already it may be worthwhile getting your doctor to test for lupus/rheumatoid arthritis/sjogrens/other autoimmune. I have psoriasis, and they keep me under check for psoriatic arthritis, as it is very likely.

You will need to be your own eds expert - look online at edhs.info.

2 likes
Reply
vfriend

The rheumatologist didn't care about EDS. I was shocked. I remember when I was first diagnosed with Fibro I went to a physical therapist. She was shocked at how far my shoulder joints can move. I didn't think much of it at the time, that was 2008 when all this started. I'm wondering if a physical therapist could check range of movement of all my joints. At least I'd know if that's the cause of my pain. I'm at the point where I sit on the floor to brush my hair and teeth and movement is important as I can't stay in any one position too long. It's frustrating not knowing what's wrong. It has to be something more. I can't imagine Fibro causes this much pain 24/7. Thank you Jay66, your words help. My pain management Doctor treats me for Fibro , my husband sees a "normal" person and I hurt enough that I'm afraid of what will come next. I need a good doctor, easier said than done here in the states since Obama Care. Our prices went sky high and benefits went way down.

Reply
Jay66
Jay66
in reply to vfriend

Hi vfriend

sorry for delay - caught up in events in UK.

Rheumatologists cannot do anything at all about eds so most of them are not interested in it. Your physio should be able to immediately do a Beighton score for you - I score 9/9, even though I am very unfit. In UK it is often a physio who suggests you may have eds hypermobility.

There are a growing number of specialist doctors here in UK, and there are several specialists in USA - Brad Tinkle is well known. The last big eds symposium was held in May in New York. it should lead to an overhaul in the diagnostic criteria used for eds, and will raise the profile of eds so more doctors are familiar with it.

eds2016.org/about-the-sympo...

I have heard that US doctors are more reluctant to prescribe stronger opioids. The key to eds is good pain management and physical therapy - I do gym-based strength training, plus tackling all the other related things when they turn up and not delaying anything. I am hugely thankful for the NHS - it is flawed but it means that, with a push, I get what I need and not what I can afford.

Best of luck.

Reply
Yogibear11

PEA is a supplement and it has eradicated almost all my pain. Please google it.

Reply

You may also like...