Hi everyone. I’m looking for your thoughts. I have been suffering from considerable pain for a year now. I have alternating pain in my buttocks, pain in my left shoulder and at various other points in my back. I have nerve pain in one leg that travels to my foot. After a lot of physio both paid for and nhs and little improvement I was sent to rheumatology. The rheumatologist diagnosed joint Hypermobility Syndrome. I scored 5/9 on the Beighton score. He kept saying I have soft skin, but my skin is not stretchy and it doesn’t bruise easily. Since my late thirties I’ve had quite a few stomach issues but the start of this also conincided with my gall bladder removal. I have a lot of problems with different foods and also medication side effects. The only other thing I’ve had is two epidurals that did not work (quite disconcerting when they start slicing you open during a caesarean and you can feel it!). I’ve never considered myself ‘bendy’. I certainly have never been able to put my hands on the floor when touching my toes. My only party trick is to roll my big toes as they are double jointed. I’ve now been discharged by the rheumatologist and told that the only treatment is strengthening and pain relief. Does this sound like joint Hypermobility Syndrome to you?
Diagnosed with Joint Hypermobility Sy... - Ehlers-Danlos Sup...
Diagnosed with Joint Hypermobility Syndrome but I’m not sure.
Hi Browny52. I haven't been diagnosed yet but I believe strongly I have Eds. Your symptoms do sound like hEds. I too have had stomach issues, my skin is soft, my epidural didn't work, joint pains, my gall bladders been removed but I also get the extreme fatigue, the bruising, the stretchy skin, shooting and stabbing pains and my left hip pops out plus I was bendy as a child. There are 12 members of my family that have symptoms that correspond with Eds but we are all different as to what symptoms we have and how they affect us. I'm also looking into Mast Cell Activation Syndrome which can be associated with Eds. It is a matter of finding things that work, foods to avoid, eating routines, sleeping well, exercise. Some things work and some things don't. Also this condition hardly affected me, just some niggly stuff until I hit the menopause and things became considerably worse. I hope you find the answers your seeking.
Jane
Thank you so much Jane. I’m on the cusp of menopause so guessing that is what has made things trigger. Food is a big one for me. I get all sorts of problems that are relieved by elimination diets. I guess I was unconvinced because I have never considered myself bendy. I suppose there are different degrees of bendy depending on which joints are affected. I’m trying to strengthen up with the help of a physio but it’s difficult with the widespread pain. Still as you say it’s finding what works and what doesn’t. Onwards and hopefully upwards 
Angie
Hi Angie. I haven't been able to find much on how the menopause affects hEds/Eds other than it does. I get the impression that much isn't known about these conditions. I didn't know I even had it until a friend sent me an article 3 weeks ago. I've always had deafness and tinnitus, GERDs on and off, stretchy soft skin, a hip that pops out, bendy joints, bruising, etc and I just put up with it but its got out of hand over recent months. I'm dreading going to the doctors.
One thing with the GERDs (acid reflux, indigestion, pain) I tried recently was the anti histamine Loratidine which is also used for hayfever. I read somewhere that there is a link between Eds/hEds and mast cell activation syndrome where there can be an overload of histamine in the body in regards to food sensitivities and allergy reactions, and it worked. It took nearly a week for my symptoms to die down. My GERDs used to come and go and there were certain foods and medicines that would set it off but since October I've had these symptoms continuously so I was quite surprised that Loratidine worked. I also use Nexium which helps too plus avoid foods I know that set it off but there's always that element that cause a problem where its not known what the cause is. We can only go forward and take each day as it comes.
I have had recurrent GERD. Usually take Omeperazole for a couple of weeks and it sorts it. I haven’t had it for a while but had a bad bout in January. Interesting about the mast cell activation. Will try that. Just wish I could get rid of the daily pain. Xx
Dr Reinhold, who did the Toolkit for doctors in the UK, put me on Loratidine and Ranitidine. Cleared up the terrible rashes I was starting to get, and, best of all, greatLY reduced my brainfog and fatigue!
I'm so pleased I stumbled onto this post as I've been recently diagnosed with hyper mobility syndrome. I have all of the symptoms,(tinnitus, double jointedness, hiatus hernia, etc) and have not thought there was a connection. I found that the menopause made my symptoms far worse, I hauled myself on a bar stool and tore a ligament in my knee in November, which still hasn't healed.
Amesburyarcher, I also have the terrible rash (for 18 months) and thought it was a food allergy, so I'll try loratidine, many thanks!
Hello Ladies,
I only got diagnosed at 54 after 20 years of increasing gut problems, gall bladder colic and constipation and fatigue. I had had joint problems as a child and young adult, osteomyelitis as a toddler, flat feet, growing pains, chondromalacia patella, hallux valgus and was told by my orthopaedic surgeon who removed a pre-patellar fat pad due to impingement, that I had "lax ligaments" - this was 1985! I too had atopic symptoms, asthma, hayfever, dermatographia, allergy to sticking plasters etc. Then mid 30s the gut problems. late 40s the joints really started to play up and I had my hallux valgus corrected privately because I couldn't sleep with the pain. The xrays showed I had bone erosion as well as arthritis so he did tests. I have lost count of the number of times I was checked for rheumatoid arthritis since childhood. He said people who were hypermobile (like he himself was) tended to experience more bone and joint pain as they aged. I had been aware that my blood pressure was low since my mid 30s (I'm ex RGN), I became aware of a racing heart and have never been able to tolerate high temperatures since childhood. I had seen a private GP and tried bioidentical hormones just blaming everything on the menopause which I finally went through at 52 but no help. Finally I saw a different GP who referred me to a gastroenterologist, endocrinologist and rheumatologist on NHS. the gastro found a sliding hiatus hernia. the endo did various test and my adrenal gland just about responded to ACTH stimulation. the NHS refused the rheumatology appointment!! whenever I googled my symptms hEDS came up, but I thought, "I've never dislocated" even though physios had always said I was hypermobile - and I was an orthopaedically trained RGN, we were never taught about EDS/hypermobility. It was the endo registrar that suggested EDS, he did a Beighton score assessment and agreed to do a 24hr ambulatroy BP monitor which confirmed my low BP (75/54 at times). He got the consultant to agree to my request for an echocardiogram (which was fine) but wouldn't do a genetic referral. I managed to see Dr Hakim privately and he diagnosed me Nov 2017, I didn't realise the amount of movement in my joints was not normal, even though I had stiffened up considerably as I aged lol! My symptoms have definitely progressed due to the meopause, I think I started perimenopause late 30s, when my gut started playing up. My bone density declined markedly in 3 years after only being 1 year post menopause and I have osteopenia L3/4, arthritis L1/2. I have tried bioidentical hormones again but they make my liver and gall bladder pain worse, and my legs feel so heavy, the veins sting and just feel so congested. The oestrogen acts as a tonifier to connective tissue, so it has more elasticity and stronger muscular contraction to the gut and blood vessels, whilst progesterone is a relaxant, it allows for an easier labour and delivery and also why women tend to suffer more constipation premenstrually. explains why my sacro-iliac pain was horrendous post ovulation and I longed to have a period (always felt better then). Generally hrt is not recommended to us beause of the effect of progesterone but if you have had a hysterectomy that usually isn't a problem as you don't need it. I also realised that I still had allergies to sticking plaster when using a hrt patch and kinesiology tape but thankfully no more asthma and hay fever (homeopathy helped that, I know some won't believe but it worked for me). I became allergic to prawns and oats with the menopause so I do think mast cell activation plays a big part in this condition and is perhaps the difference between hypermobilty and eds which has a multi-systemic reaction on the body. I am the first in my family to be diagnosed but Dr Hakim could see symptoms from my mother's past medical history and both my sons, they also suffer with allergies. I tried ranitidine but didn't find it helpful for my gut. I use digestive enzymes when necessary (usually when I need to repeat my homeopathic remedies, otherwise I don't need them) and follow an anti inflammatory, low histamine diet which has helped my joint and muscle pain no end as well, it took 18 months for my golfer's elbow to settle down. I didn't get on with codeine (oh god, the constipation!) or anti inflammatory meds (the mouth ulcers, goodness knows what they did to my stomach), and the proton pump inhibitors, they block vit B12 and my bones need that, as does my brain and the gastro advised against them, she was happy with the use of digestive enzymes and magnesium for constipation. I think the health of the gut is key to this and many other health problems) and if you can calm that down you calm down the inflammation within the body. add to the fact that most medication has a detrimental affect on the gut and no wonder we get things like leaky gut, allergies etc and this affects how we absorb nutrients, causing fatigue and dysautonomia (yes good sleep patterns certainly help but somehow is illusive at times, the whole autonomic nervous sytem goes out of whack, so we adrenalin is high when we need rest and digest) I have learnt a lot about what suits me and what doesn't over the last 2 years and I do feel better than before diagnosis, it's a long road of self discovery and healing. sorry about the ramblings but just some thoughts as we all seemed to be going through the same thing x
Thank you Steenygirl.
Thank you for your post.
I'm a nurse too - how funny. I haven't gone to the GP because I dread all the tests that may be done and the travel especially when I have severe fatigue. I also know that in my area they are limiting appointments for referrals and I don't want the stress as that sets my symptoms off. Thats a problem when you know the system and what's coming up.
It is about managing symptoms and finding out what works plus trigger factors.
When my sleep goes pear shaped it affects my stomach which then affects my gut and I get what feels like hot flushes with nausea and headaches, shooting and stabbing pains ,severe tiredness, bruising, swollen abdo and all sorts of things which then affects my sleep. Its like a vicious circle and hard to break out of. I haven't had my bones checked so I've got no idea what state they're in. I have a hip that pops out and I have to do some bizarre pelvis motion to get it back in. My daughter was diagnosed with early onset osteoarthritis in her knees at 18. I don't know why I've suddenly started talking about bones here - sorry.
I wish the NHS better catered for hEds, Eds, MCAS and other associated conditions. If the NHS thought about it and had an appropriate careplan/referral system it would save them bucket loads of money in the long-term. My GP is great and easily approachable. If my care would be through him I would be happy. In my past I have been to see doctors about unusual symptoms and often they didn't have an answer as to what was causing it.
It's good to talk about what we have been through and how we are. Here, on this site, I finally feel people understand.
Thank you for sharing. Much appreciated.
Jane xx
Oh the fatigue is awful, feel like just getting through the day is an uphill battle. Thing is there is no treatment. I had to pay privately to get decent physio and addressing the gut issues and finding out what doesn't agree has been the biggest help to all symptoms. Completely agree that fatigue makes the gut worse but it's all that autonomic nervous system dysfunction isn't it. Pace pace pace, all you can do xx
Until my rheumatology visit I had no idea this was a condition with multiple issues. Like some of you I’ve had various people look at me and tell me I’m hypermobile, but I’ve never been particularly bendy. But it explains all the stomach issues and other random things that happen. If I could sort one thing out it would be my butt pain. I would love to be able to sit again!!.
Absolutely, and take each day as it comes. I can't look any further than today. The extreme fatigue is what gets me the most. Can't do anything, can't sleep. Even if I do whether day or night I still feel a total wrecked. Housework builds up. Kids get frustrated, and I get fed up when people keep telling me I look ill. Panda eyes are not a great look, and it's embarrassing when I nod off in places where I shouldn't like friend's houses. My kids think its funny though.
We'll get there with patience and a never give up attitude. xx
Hey ya, yes it sounds like joint hypermobility, just on the severe side...
I too have it, I suffer with stomach issues, both shoulders have subluxations and dislocations, I have nerve problems, my knees bend backwards, chronic pain, chronic fatigue, left hip is particularly bad, spasms, migraines and head/neck issues, along with all the other fun things that coincide with it, I too have the super soft skin, I don’t even score that high on the Beighton score a lot less than you, but I have a few other issues and I’ve suffered for years and only seem to be getting worse.
Does sound like jhms, unfortunately, you’re just at the bad end. I count myself lucky, it’s not in my knees and I can still walk about.
Hope this helps x
I agree with AiMax. I am newly diagnosed with hEDS
And have same Symptoms as you. For me
Food
Allergies and MCA are a huge component (and reactions to meds). The key thing is that everyone is slightly different with how many of the symptoms they have.
Newly diagnosed with hypermobility
More than just benign hypermobility syndrome?? 
Maybe it's hypermobility syndrome
Hypermobile joint syndrome and h-EDS
Afraid of vEDs