I'm so miserable I don't know where to start! I posted on here for first time in December about how I saw a gynaecologist who said I 'almost certainly' had EDS. I had never heard of it! I went to see my GP who after he stopped laughing referred me to a genetic clinic St Mary's in Manchester. I was seen for 10 mins asked if I do "party tricks or gymnanstics?" When I said I didn't I was discharged and refused a second opinion. I was also treated as being awkward for not knowing my family history (I was brought up in care.
The symptoms I have are unbearable. Whether they are related to EDS or not I just want help. I have a prolapse. (I don't have children). I have major constipation and constantly in discomfort with bowels due to constipation and prolapse and spent hours each day in the toilet. I wet myself. I also have hiatus hernias and major GI issues bloating, wind heartburn, major abdominal discomfort and have been on hospital merry go round since childhood. However thigs have got much much worse.
I am tired all the time and have major sleep disturbances, night terrors and chronic migraines which I wake up with and completely ruin quality of life. I fall asleep in bath. I was told I was deficient in B12 and vitiman D but still terribly tired because keepp waking early in pain. I have large various veins. I can't walk without falling over. I have very flat feet and plantar facitis. I have clicking knees and joints. I ache all over I have pain in my hips. I can't get any shoes to fit me. My ankles go over. I brusi very easily. I am very depressed and anxious I also have autism. I have dark circles under my eyes and chronic sinus problems. I was told I had some problem with back of throat as well and to go to A and E if I have difficulty swallowing. I am alwasy having to clear my thorat as well with post nasal drip and people laugh at me as I always sound like I have a cold.
However I cannot bend my thump to touch my rest or bend over and touch my toes. I actually feel quite creaky and stiff so I don't have hypermobile EDS. So I was refused a blood test. After complaining to my GP he referred me to the only other place an EDS unit in Sheffield who refuse to see me as well as they don't see people with suspected hypermobile EDS only rare types. How would I know what 'type' it could be?
I also have low blood pressure, tingling pins and needles dizziness. I have always had this but this was put down to diabetes. I can't think straight. I'm desperate with headaches no sleep bowel issues. Looking back on old hospital records it said I was hypermobile in hips. However now I have been dismissed by the clinic at St Marys and refused a second opinion I have nowhere else to go with this. The GP did refer to a rhemotologist but was told the only place he could refer me is Sheffied. Now they have said 'no' there's nothing left. I have zero quality of life. I am even refused mental health services as I ma told my mental health trust won't treat people with autism. I tried complaining but got nowhere. I can't carry on.
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Hi there. I'm so sorry to hear you are suffering so much. It's not right for you to be this ill. If you cannot be referred what is your GP doing to treat your symptoms. He can treat your stomach, bowels, sleep, vitamin deficiencies and pain. You don't need a diagnosis from a specialsit for that. Do you have anyone who supports you at home like family or friends who can come with you to your appointments. They may be able to speak on your behalf?
You do sound like you have EDS. I've been ill like you describe. What I've done is tackle one thing at a time. Sleep is the first one I started on because a lack of sleep can affect your stomach so when my sleep was sorted my gastrointestinal tract improved which then improved constipation, the headaches, nerve, joint and back pain. It takes quite a while to sort things out. There is no immediate answer sadly.
Love and support to you. Call on Jesus, ask Him for help and then look for the unexpected.
You can educate and treat yourself with eds or without. Drs don't have access to information that we don't have access to any longer. I'm a successfully self treating patient at the start then got on to a good Dr.... But I'm still the lead....I know me better than him, he's using my feedback for treatment.... So my understanding is critical. Get online, learn everything you can and then go about what you want to achieve. Look and ask for miracles and they will be with you xxx
Your GP can now diagnose EDS himself. The RCGP has a tool kit for them to use. Take the URL to your GP next time you see him, and also read it yourself. You might want to print out the check list and check what you can of it to help him along.
As for being stiff, one clinical researcher found that something like 75% of his EDS patients couldn't put their hands flat on the floor because they were now so stiff. They think that sometimes when the joints are unstable the muscles tighten up to make up for this. My son who was diagnosed with EDS by a paediatrician has never been able to put his hands on the floor, in fact that is one of the reasons why we first went to see a physio. And yet at 58 I can still put my hands flat on the floor, but I can no longer touch my thumb to my wrist. The Beighton score is not the only way of diagnosing EDS, they should also be looking at your skin.
To be honest, having a diagnosis mainly is for your mental health and changes virtually nothing in your treatment. But it feels soooo good to know what is wrong.
You should be getting good pain management and treatment from your gp regardless of the cause. You should be getting help for each of your conditions, whether they have one cause or many.
The problem we all have is that we are often too tired and lacking in the energy to push for our rights. Do you have someone you can take with you who could be an advocate? Somebody with a health background would be ideal, but somebody who just won't take no for an answer is just as good.
I went through the lacking in iron/B12/vitamin D thing too. It didn't have any effect on my fatigue. It was just another 'fobbed off' moment.
It does sound to me like you have hEDS - the hypermobile bit means that as you get older, you stiffen up usually at a faster rate than other people. You don't say how old you are. I didn't do 'party tricks' either and only realised I was hypermobile when I was 31, but I scored 9/9 on the Beighton test aged 47. I wouldn't score that now though, just 4.5 years later, due to stiffening up.
If you are not being treated properly please do what I didn't do:
If you are sticking with the NHS, make an appointment for every single one of your separate conditions consecutively - one after the other (which is what you are supposed to do) which should ensure you get a good block of time in which to really cover all your conditions. Do as cyberbarn suggests above. GPs hate this but it is your life, not theirs.
Write them all down, and go into your appointment with an advocate who can take over the discussion when you feel too frustrated or angry or upset to carry on.
Alternatively, if you can afford £300 and a fare to London and back, or can beg or borrow it, book in with one of the private specialists.
There should be a PALS group attached to your hospital. This is a Patient Advice & Liaison group. They are run by professionals who are there to help you get the best from your treatment and to deal with any complaints.
It may be worth getting in touch and using them as advocates.
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