Re, searching for answers: Hi I am a... - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK
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Re, searching for answers

Ibs17
Ibs17

Hi I am a member of another group on here, but I am wondering if I have aEDS. I saw a woman on the nhs quizzes who had something like this and I thought that sounds like me. I have IBS and have been told by GP after many years of fatigue and aches and pains I have fibromyalgia. The IBS has got worse and worse and I now have diverticulitis too. I have been reading about EDS and can either now do or could do most of the diagnosis movements p, my daughter can too. As a child I could put both my legs up above my head when sitting then wrap my feet around my neck. Non of my friends seemed to be able to do this. My friends nearly fainted when I could pull my wrists out and make them pop, like people do their knuckles. My hips and knees have always clunked/crunched. My knee on the right side and ankle often just give way and both my wrists and ankles click and get stuck sometimes. My elbow cracks badly, GP says it’s tennis elbow one side and golfers, the other, it looks at times and I have to get someone to pull my arm to unlock. My thumb can bend back and get locked to and has to be pulled to crack and go back in. I can’t do sit ups and a teacher once said in PE and a yoga instructor that I have a small curve to my spine. I noticed on some of the posts childbirths can be quick and easy, my second child was born extremely quickly and unexpectedly in about half an hour. My first pregnancy I was very big, only being 5ft 3 I looked like a ball on legs, but I had to buy pregnancy girdles as the pain in my pelvis was unbearable and that was all the GP suggested. So much so I could barely walk when I became overdue, and would soon feel very faint.

My daughter has Hypermobility more than me and could do the splits at age 4 without any practise. Her elbow is at a very strange angle when she puts her arm straight and so is mine but to a lesser degree but we can both rotate the arm further than anyone else we know.

I am clumsy and often trip on nothing,was terrible at sports, never seemed to have the habpnd eye coordination.

Lastly I have really bad pains in my hip and groin area and can’t go to the gym and use the equipment as my knees, hips and arm joints become very painful. I’m sorry for long post but I’m desperate to find out what is wrong. I understand like everything else I have there is no cure and not much help from GP and consultants. Thank you Jackie xxx

12 Replies
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Certainly sounds a strong possibility, some of that matches me (although while nearly all my individual joints are very flexible I've never actually been able to contort my body into strange positions!) I was diagnosed with hypermobility spectrum disorder for now though rather than eds.

Have you raised it with your gp or seen a rheumatologist? It will normally be a rheumatologist that can diagnose it but it depends on whether they are knowledgeable about hypermobility disorders and hEDS which unfortunately not many are. They seem to be mainly experts in things like rheumatoid arthritis, and connective tissues disorders seem to have just been lumped into rheumatology but with no concern given to ensuring there are experts in each department who can correctly diagnose/treat these...

Some people choose to go to their gp with print outs from websites of why they believe they may have it and have some success this way (depends on gp!) I knew that there was somebody considered an expert in my local hospital rheumatology dept so, once the gp had acknowledged the link between my hypermoblile joints and my chronic pain after I told her what a physio had said (I don't remember her ever examining me herself), i focused my efforts on referral to this particular consultant.

It was a long road in the end which I won't bore you with but when I eventually got to see this consultant it was a bit disappointing tbh as any of my concerns on symptoms/family history etc not relating specifically to the joint pain were pretty much dismissed, and although I got this hsd diagnosis I don't feel I am getting much if any advice really to manage it and I do have genuine concerns about the

eds side of things that haven't been addressed and may not be until it is suddenly more serious

jpain
jpain
in reply to jpain

Oops submitted that too soon again!

Basically my advice would be to get then to acknowledge the link between the pain and the hypermobility first and take it from there. I wouldn't mention eds necessarily at this point as it seems to make you come across to gps as a hypochondriac or something as they only seem to be aware of classical eds which has quite different synptoms.

Anyway hope that made a bit of sense must get back to work!

Ibs17
Ibs17
in reply to jpain

Thank you for your reply, I have seen on the other group I’m on that a lot of people with Irritable bowel and fibromyalgia diagnosis have also got EDS, I will go and see my friend who is a very well trained therapist, she has helped my daughter with her dodgy knee and had helped a bit with my fibro pains. I will get her to check my joint movement as she knows what is a good range and what is past that range. I won’t bother the GP again, I have been so many times about my joints and problems with them and have never been sent to a rheumatologist, just been very told it’s wear and tear and put up with the pain or take strong pain relief which just knocks me out. I know there isn’t any help, it’s just knowing what I’ve got.

Tillyray
Tillyray
in reply to Ibs17

Hi. From what you describe, I can relate to the same. I did gymnastics in my youth, and family said I was 'double jointed'. I had odd joint issues put down to 'growing pains' and strange unexplained fatigue. Blood tests were negative and Doctors said I was fine, so I carried on, with pains and illness..

Fast forward 20 years, and joint pains increased along with other symptoms and illness'. I saw many Doctors and received various diagnosis. I also got referred to a rheumatologist who diagnosed me with the 'catch-all' fibromyalgia.

My son had reoccurring viral infections as a child, then became seriously ill and partially paralysed for a few years. He was diagnosed with chronic fatigue syndrome/ Me (chronic fatigue can be present in any illness/ condition. Although there is chronic fatigue in ME, ME is NOT JUST chronic fatigue, as some misinformed medical professionals still believe) There also appears to be misdiagnosis of cfs and fibro being given instead of HSD and EDS. This is likely in part due to Doctors, general rheumatologists lack of knowledge of HSD/ EDS, and also because fibro, cfs symptoms exist in HSD and EDS. I have read that there may be a link with these conditions, which I am hoping will be given attention by researchers in the not too distant future🤞

I knew I had more going on than only/ or instead of fibro, and I protested this to the several Doctor's, rheumatologists I saw over the years. I know they were beginning to think I had psychological issues and told me I needed to 'accept my fibromyalgia diagnosis'. Their dismissive attitudes towards me would leave me feeling totally demoralised. Not one of those 'specialists' could answer what my certain serious symptoms were because of, or why I was becoming increasingly disabled. It certainly wasn't in the fibromyalgia list of symptoms and they knew it. But it was easier for them to fob me off ..

After getting unprovoked ankle tendonitis / tenosynovitis that left me in agony, unable to weight bare for several months, I was referred to another local rheumatologist and had an MRI. He was uninterested in connecting my symptoms - as had been usual- and although he couldn't understand why I had developed a 'drop foot' and had no mobility in my ankle/ foot, he discharged me!.. I chose two other specialists out of my area after for second opinions. One to rule out vasculitis, and the other was a specialist in connective tissue, where I was told I had hypermobility. I spoke about my son and was told to get him seen by a rheumatologist. However, despite being very ill and barely able to walk, I was discharged again!

I had no where left to go. I found this site ( thank you everyone🙂❤ ) and I began to do my own research which lead me to pursue an EDS diagnosis, for me and my son. It meant travelling to London, but it was worth it. We were both diagnosed with hEDS. I was told that Fibromyalgia does not cause subluxing joints - the reason for my tendonitis- and that fibromyalgia is a collection of symptoms.

There hasn't been a great deal of help or support from our GP practice or local hospital since our diagnosis. But our diagnostic letters did pave the way for further investigations and tests. It was also crucial for my sons surgical team to safeguard against potential complications. Also, we have been treated with respect from the medics we've seen, rather than viewed as hypochondriac. I certainly have some piece of mind knowing what my son and I are dealing with. It means we can better manage our symptoms and ensure correct and appropriate treatment.

The new EDS toolkit on the Royal college of GP's website enables GP's, medics to familiarise and understand these conditions and comorbidities. You could direct your GP to this link and hope to be referred to a knowledgeable rheumatologist. Or go privately with your daughter to see Dr Hakim in London.

Get back to us or dm me if you want any help.

Good luck and best wishes xx

Ibs17
Ibs17
in reply to Tillyray

Hi thank you so much, I have looked into EDS before and through working in a school and carework have come across a few people with EDS, also on TV but they had severe forms. On furthur research I saw it is a spectrum of symptoms. My daughter has a diagnosis of Hypermobility but nothing else. My mum had a diagnosis of ME, but she had more than that, her GP started some tests but mum became so ill with breathing difficulties and COPD, that the GP didn’t continue. She also had diverticulitis,which I now have been diagnosed with after many many years of having IBas diagnosis , but I understand from the IBS group on here it can be part of EDS too. I have started to “loose control”sometimes.

Can I ask do you or have you had very, very painful periods, as my daughter and I have really suffered. I no longer do, but she does so much she is a teacher and has arranged with GP that she can take the pill for two consecutive months so that she then is ill in the holidays., otherwise she would have to have time off. My mum had some of the EDS symptoms. I am still managing to work a few hours a week, but the fatigue and pain is really bad some days. I’m a carer and have to be very careful when kneeling or squatting as I soon am in pain and unable to stand again.

I will go back to GP and say joints are getting bad and painful, see what they say. I might get referred to a rheumatologist then maybe get somewhere. Thank you again for your reply. Jackie

Tillyray
Tillyray
in reply to Ibs17

yes do see your GP again. I hope they're supportive.. In my years of experience with Doctors, I've found they have had no knowledge about EDS and no understanding of the complications that come from having hypermobility. Even the rheumatologists I got referred to didn't make the link with being hypermobile, pain and the array of symptoms.. I'm going through menopause now which brings its own problems when you have EDS. I did suffer horrendous heavy, painful periods which blighted my life from the off, so I have lots of sympathy for you and your daughter. Unfortunately it is a common symptom with EDS. I only received my hEDS diagnosis last year, so didn't receive any helpful treatment during my menstrual years. Hopefully there is something available to help you both..

I also suffered with terrible bowel problems and got diagnosed with IBS some years ago. It got so bad that any food I ate caused severe diahorrea, with pain, sweating and illness. I also then would have constipation the next day which was equally disabling. Fortunately it has settled with a gluten/ wheat- free diet. I am also vegan so don't have dairy. Although I know this doesn't always work for everyone,I would say give it ago as there's nothing to lose. I'm glad I did!.. During an Autonomic dysfunction flare, I do get some bowel problems which is also a symptom of the condition, but I know it is because of that and it soon goes.

There is much info to be found ehlers-danlos.org hypermobility.org and the USA ehlers-danlos.com

There is a fabulous booK; Understanding hEDS and HSD by Claire Smith. Redcliff-House publications..

Remember the EDS toolkit for your GP. rcgp.org.uk Good luck xx

Ibs17
Ibs17
in reply to Tillyray

Thank you that puts another piece in the puzzle for me with painful periods. When I was younger like my daughter I would sometimes pass out with the pain. I will look up more and I’ll see GP. My IBS has been so bad lately but they just say diverticulitis or gallstones. Still have not had an endoscopy, never have.

Good luck with the menopause, mine was very early I was 35 when it started and 45 at the end. GP at the time would not do tests said it was perfectly normal. Thanks again I will look up all the links and get myself savvie.

Ibs17
Ibs17
in reply to Tillyray

Have just been to see GP and they have diagnosed Hypermobility and arthritis in my hip, knee, elbow and wrists. Didn’t look at my spine even tough stated very painful neck and back and they grate as much as the othe joints, but at least have got something. Have got self referral to physio, so will see what develops.

Tillyray
Tillyray
in reply to Ibs17

Hi. It's good that you finally have some answers, I hope you feel some satisfaction with your diagnosis'. Hopefully you'll now be able to receive appropriate care...But as arthritis can develop in hEDS, and you and your daughter have hypermobility, you may still want to consider pursuing a hEDS diagnosis for the both of you? Hypermobility alongside other symptoms usually indicate HSD or the hereditary hEDS...

Physiotherapy is the only main recommendation for EDS/ HSD - I've recently started a physio programme- and so you might find that a hypermobility physiotherapist can help you address your main concerns.. My initial hypermobility diagnosis started me and my son on the path to the hEDS diagnosis. But physiotherapy is still all that is offered. However, our other body system symptoms/ conditions, have been considered because of the hEDS diagnosis', and correct treatment received -Autonomic dysfunction, postural hypotension etc- which had not, and would not have been otherwise..As I've said previously, an EDS diagnosis can help safeguard against potential complications as it did for my sons surgery. But so can just being aware of all these issues and applying the information just as if you and your daughter had that diagnosis. Continue to research, because being armed with information will also help you and your daughter if you suffer any symptoms that Doctors don't understand.

I wish you all the best on your 'health' journey. xxx

Ibs17
Ibs17
in reply to Tillyray

Yes thanks it is just the start, my GP suggested I look on the arthritis website so I can then say I have seen the EDS page and could I have that. I have been looking at it and I do have problems at the dentist with pain relief not working and dentist getting grumpy as I have to have more than normal. I also had a small operation with the mind numbing anaesthetic, it didn’t numb my mind but paralysed my whole body. I could hear and feel everything and the only thing I could do was cry, but the stupid dental surgeon dismissed the nurse saying there was something wrong and said it was just my tear ducts. The anaesthetic finally worked when I got home, thankfully my kids were at school and my mum was with me as I slept for hours. I also have had teeth removed and the dentist was worried it wouldn’t stop bleeding. I also have a very slow recovery after cutting myself and bruise extremely easily, my mum did too. The whole family have arthritis my grandparents, aunts, uncles, cousins and my mum. Thanks for your support, I thought I was just a hyperchondriac and the family are getting a bit fed up with it all.

Tillyray
Tillyray
in reply to Ibs17

That sounds to have been an absolutely terrible experience, I'm so sorry this happened to you - I'm sending you lots of hugs- but now that you're aware of the issue, always make sure everyone involved in any kind of procedure from taking bloods, intravenous lines or surgeries, are fully aware of it and will take more care and appropriate action.. Slow wound healing and bleeding profusely are one of my 'things' that at routine blood tests I'd be asked if I was on warfarin - I never have been- but luckily my sons bleeding is reasonably normal -thus far, and hopefully will always be- yet I was ok with it in my 20's. I dont know what changed it?..The more we research the better understanding we have, and we also feel confident to educate those medics who we need to treat us.

So many of us have been viewed as hypochondriac's or just in need of psychological therapies, for having a mix of symptoms which the Doctors we saw didn't understand. You have to develop a thicker skin to deal with them and not allow them to make you give up on finding answers! You know what is really true about you!...I can relate to 'family getting fed up'. It must be worrying for them to see we aren't getting any better. Our ongoing search for answers will be confusing, especially when we've already been given one diagnosis. I've had mixed reactions over the years from my extended family. They just didn't always understand. But how could they when its not happening to them, even I've found it to be a crazy roller coaster of an existence!

It's good to have the support on here from people in the same boat🙂 and you can always dm me. xx

Tillyray
Tillyray
in reply to Ibs17

Re anaesthetic resistance... for dental, or other minor surgeries: a double dose of anaesthetic by intradermal injection may be an effective first choice.. From the book; Understanding hEDS and HSD by Claire Smith. Redcliff-House publications 2017

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