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Ehlers-Danlos Support UK
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Welcome!

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Hiya all,

My name is lucy and I have EDS hypermobility type....was on the fibro community but its not right for me.....I'm at home here with the other bendys :-)

I work full time with special adjustments and generally feel like poo most of the time, try to keep things in perspective though.

Getting to grips with pacing now and see an osteopath twice a month to keep me in check.

My biggest problem Is the fatigue quickly followed by the collapsing ankles...very embarrassing. Trying to lose weight and have gone on a wheat free diet to eliminate the gastro issues....so far so good.

I don't take any meds, I'm trying to improve my muscle strength first especially my core muscle to hold this poor body up :-)

Would like to know how other cope with the inappropriate surges in adrenalin... Makes me feel awful and panicky ...that is something I can't seem to control..

Xxx

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Hi Lucy.... I have Fibro too, but when you have as a consequence of EDS its a different ball game ..cos I think if youre bendy some people dont get it.Am trying too to get to grips with pacing..not easy as I like to be busy. Take quite a few meds ....tried without but cant hack it...I have OA in hands and neck which is painful...as to fatigue I find I am coping better cos I usually get a decent sleep now using Gabapentin and Amitriptyline. Adrenalin surge which I only recently found was why I wake up at 9-10 at night..is hard to deal with..try to relax instead of rushing around. I am finding that winding down after tea is good...am going to try meditation. If you have a good nights sleep it helps too..at least not quite as fatigued during the day....I always carried on regardless of how tired I felt..now older and wiser. The panicky feelings are awful. Have you tried slow deer breaths....and a little time out.

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Hi everyone,

Diagnosed with EDS when i was 16, stupidly trying to maintain a full time job at the same time as living with this agonizing pain. Sick of being passed from pillar to post and being told that 'a bit of physio will do you good'.

Currently on tramadol, fentanyl, paracetamol, nefopam, amitryptaline and naproxen.

Looking for friends who know my pain, and as well as hints and tips for good supports!

Hiiiii *waves*

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Hi Sam, welcome. There's nothing stupid about trying to maintain a job, you need to pay bills somehow. Sadly being passed from consultant to consultant seems to be routine (they don't really know how to handle us other than with Physio/Hydrotherapy.) I've seen GPs, Rheumatology, Orthopaedics, Musculoskeletal, Occupational Therapy & Podiatry for much the same thing - my swollen, tender joints, all of them conclude much the same - manage with gentle exercise & NSAIDs.

Generally to survive the working day I would take NSAID tablet first thing in morning to relieve any swelling from overnight (carpal tunnel syndrome/tarsal tunnel syndrome) in the theory it would be fully working to relieve pain by the time I started work. Any typing/computer use would be with wrist supports (you can get mouse mats/keyboard mats with these). I asked work for a 'risk assessment' to ensure I had the best desk, seat & tools available. After finishing work a soak in the bath would help ease tired muscles, some gentle stretching after getting out of the bath just adds to that. Finally a second NSAID tablet before bed to relieve the swelling & pain from being up & about all day.

It is 'trial & error' to find what works for you & some days will be better than others.

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Hi. My name is Lissa. I'm 42. I have no official diagnosis but EDS has been mentioned by an orthopaedic surgeon looking into my De Quervains syndrome. I'm trying desperately to get a rheumatology referral but my GP is treating me a hypochondriac as I have suffered from depression and anxiety. I am currently prescribed Pregabalin (for anxiety and neuropathic head pain), co-codamol and naproxen. All my joints hurt. I have tendonitis in both wrists and ankles, IBS, extreme fatigue and fit the Brighton and Beighton criteria. I'm pretty much at my wits end.

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Hugs and hope you break through the wall of ignorance soon. Can you see a rheumatologist for your pain and mention your EDS symptoms in an attempt to get properly diagnosed? I got diagnosed by the fibro clinic after a 2nd opinion with a different physio. I left because they wouldn't support my need for a wheelchair.

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Welcome Lisa. I had the Ashe journey as you. Maybe try taking a factsheet from HMSA with the Beighton criteria on, to your GP? I was lucky, mine said I don't fit all the criteria but Hypermobility syndrome is very under diagnosed so perhaps it is. He referred me to Prof Grahame at the UCL when I asked him to. Some other rhuemys aren't always great. I was diagnosed with fibro, although I only meet the pain criteria. It's annoying how different professionals don't join the dots. I'm fed up with how often they say in response to pain in a joint -well it's very flexible! As if therefore it shouldn't be painful and therefore I must be making it up!

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Thank you! Yes, I think thats the way to go. I'm going to print out some things and I'm planning on taking my Mum with me for backup. I'm determined to a diagnosis so I can get on with my life.

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Hi I am Annie 49 years old and struggling a lot was advised to join a gym for my 'fibromyalgia' now i am in so much pain and its not going away. I have 2 grown up children both have Aspergers but are lovely amazing young ladies that i am very proud of. I have joined this forum in the hope of getting advice and making some friends if possible. I worked as a librarian at a central library for 30 years before having to retire. I hope everyone is coping ok? xx

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hi my name is nean 1965 i'm new to this post stuff i agree being at home a being out of the loop with friends snf family can make you feel much worse. I don't know if it's possible for you to get out of the house 2 day a week even for a coffee break with your friend it brings your spirits back to where they should be. i hope this helps

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Hello, I'm Ally and was diagnosed with Aspergers age 16 and EDS age 32. I have been a wheelchair user for the past 4 years due to my EDS and fibromyalgia and have written a book about Aspergers (pre EDS diagnosis). im also diagnosed with raynauds and trying to get a PTSD diagnosis. I have secondary depression, anxiety and insomnia.

I find the pain and fatigue to be hardest to deal with along with explaining to other autistics how I can walk even though I need a wheelchair for pain and fatigue management. Tramadol is the only medication that works for me.

im engaged and currently trying to get pregnant but I hear EDS can affect fertility?

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Hello! I had a black and white cat once who, when he sat in bright sunlight, revealed that his balck fur was actually striped. That's possibly me...FND, CFS and now, maybe, EDS? I'm on a journey to find out because things are looking scarily familiar...

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Hi

Im Ally or trekster 22, i was diagnosed in 2010 and im a wheelchair user as a result of my EDS and fibro. im also autistic, dyslexic and have a mixture of mental health problems. i have attended stanmore rehabilitation for EDS and find it really beneficial. i find only tramadol can control my pain.

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Hi, I'm 65, have been diagnosed with Ehlers Danlos last year (yes, it took them long enough LOL!). I had a prolapse ring for about 8 years but when I had endometrial cancer last year and they did a hysterectomy, they also repaired the worst prolapse. But it's now gone again! And I'm told the vaginal vault has now prolapsed as well. I'm going to be sent to a consultant who concentrates on prolapses, but I'm not very encouraged that anything is going to work. I don't want the vagina closed off completely because that's the most likely way a recurrence of the cancer would be spotted, so I wouldn't know what was going on there if anything was going wrong. I feel between the devil and the deep blue sea! Any advice would be welcome! Many thanks.

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Hiya Whatnext1, sorry you have had all this to deal with.

There is someone in London who deals with gynae for EDS, but I only have the info second hand. I thinks she's at Kings College Hospital and based at their site in Denmark Hill, but my info may be way out of date. I used to know a woman who went there and her daughters went there too apparently, as they all had prolapses and gynae problems related to EDS. I think the best thing is to ring the HMSA or EDS UK to get up-to-date information. I seem to remember this consultant is also very good re hormones and EDS as well.

Realise now I've answered I'm a year after your post here. Hope you get this anyway and hope it is useful to someone.

Best wishes from Boombiddy.

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RELIEVING PAIN AND FATIGUE:

Hi I discovered that my big toes pointed in and that this makes my high arches collapse even more, because my ankles twist in, which causes pain in hip joints or one of them. I formerly also had pain that was from pelvis twisted causing leg and back pain, from causing difference in leg length. This started to happen after childbirth, from my thirties. I worked on that with help from osteo, physio etc, but it was a podiatrist that discovered that problem causing me difficulties with wearing orthotics at the time.

If you look up bunions treatment on net, you will find treatments and toe straighteners. I spent days wearing 2 half rubber erasers between my first 2 toes and second toes and it helped straighten them a lot. Relieving a lot of pain and immobility. A simple tip I picked up from the net. God bless that person who put it there. I also now never buy or wear pointed shoes ever again. I still like to have a pair of very deep structured orthotics that stabilise around the heel area and support the arch for wearing in closed in shoes. Barefoot outside on the ground especially grass and soft sand etc is good to tone up the ligaments, muscles and relieves pain in joints. Also a good remedy for stiff and fatigued muscles is Epsom Salts (about half a packet) into a warmish bath. You could also try adding a dash of apple cider vinegar. I knew someone who bought large containers of industrial epsom salts from farming supplies. As she had a bath in it every night. Its the magnesium mineral in it that works transdermally. More effective than oral. I hope this info helps some people.

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Heyo,

I am currently not diagnosed with EDS but I do have close family members who do. I am a cautious person so I do my best to not get involved in things that might cause myself harm. I have never broken a bone nor have I ever been very flexible. Despite this, my mother worries about my the way my fingers look because they apparently aren't normal. I will one day go in somewhere to check if I have EDS but for now, I am here trying to put together some information for a facebook page and group for my class assignment and for my family.

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