SS and hEDS

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Hello everyone

As anyone been diagnosed with SS and hEDS? I can still do all the tricks of double jointed fingers and toes. I read the muscle, joint, bone pains are also part of hEDS. I haven't been to the rheumatologist yet to confirm if i have hEDS or SS or both. Since 2017 the criteria for hEDS has somwhat changed and must include a family member with it. I don't think my siblings are like me except i know my mother was very 'flexible' .

The reason i want to know is so i can stop taking Plaqenile ( i already have secondary cataracts and AMD and would rather not be on it ). i tested strong positive for SS via blood test in 2015 and 2017 (change of rheums so had to get another test) I was also told i had fibromyalgia.

i did google if plaquenile can help with hEDS pain. Couldn't find anything but then again my googling skills are somewhat lacking ( i blame it on my age 😃 ) Appreciate any thoughts on this.

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  • Posted

    I had to look up heds, because I had never heard of it before. Since it is genetic, and very rare, you would have to inherit it from a family member. I'm hoping you have only fibromyalgia, and possibly sjogren's syndrome. They are bad enough. I have polymyalgia, sjogren's and osteo-arthritis. I take emtec for pain, but only one pill before I go to bed. Also x-strength tylenol during the day if I need it. I never had any blood tests, because I have 9 of the 10 symptoms for sjogren's.

    Fibromyalgia is very painful all by itself. SS seems to attach itself to people who already have auto-immune diseases. I drink organic 2% milk to prevent osteoporosis, but no calcium, just vit. D3. Shaq, I hope you don't have heds.

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    • Posted

      hi Sally, i have since been talking to my younger sister who says she falls down all the time, is very clumsy and has broken her ankles twice (clean break) and fractured her ankles as well (in her 20s) tested negative via DEXA scan for osteoporosis . Her son who is now 11 has very thin skin ...cant hold stitches and had to use glue a few times to hold the skin..

      For pain as i have GI issues ( including GERD , bile reflux, esophagitis, chronic gastritis ) i have been advised against NSAIDS but use solpadeine i work i can only take it at bedtimes and try to ride the pain as don't want to get dependant on it ( started off with 1 g dissolving tablet and soon needed 2 ).

      my visit to the rheum was accidental as i was referred by pulmonologist ( had tiny lesions in lungs shown by CT scan) rheum looked at my tongue and ordered blood tests and lip biopsy to rule out SS. ( also had pityriasis skin stains at the time which hadn't yet been diagnosed) Blood tests came back positive (A & B) and i chickened out of lip biopsy . When my joints, muscles, tendons, bone pains took hold he said not part SS ...pressed a few points on my body ( all extremly painful) and said plaquenile for SS and Cymbalta for fibro... next appointment 2 months ....that was it !!! also diagnosed with mildly regurgitating mitral valve (angiocardigram) A relative ( neuro radiologist) suggested mild EDS at the time ... I also have osteoporosis so have to take calcium vit K2, vit D3 ( 3000 as the 1000 still had me as insufficient..again tested via blood test)

      I googled heds and all i have read suggests it is not a serious EDS and the most common one and apart from NSAIDs nothing can be done if rheum can now say No SS but hEDS then i can stop plaquenile ( 400 mgs daily)

      Must google Emtec for pain and see if not NSAID then will take that . Solpadein where i live ( expat in middle east) is prescription only and i want a OTC pain killer

      Thanks for taking the time to reply Sally . appreciate your thoughts on this and apologies for such a long reply

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    • Posted

      Emtec is by prescription in Canada and elsewhere, because it contains codeine. I also take Arnica, which is homeopathic. I buy it at the local health food store. Too many pain killers eat up your intestines. Try yogurt too. It adds calcium and is also good for your intestines. I also drink kefir. Often when I wake up during the night, I take x-strength tylenol (acetaminophen). You have a lot of things going on, and I wish I could be of more help to you, Shaq. My internist feels that most of our issues are gut-related. When I was much younger, I had duodenal ulcers. Thank God they are gone. You have to be so careful about what you eat. I am going to try a new diet. It's a food called kichari. In India it is called mung dahl. Will let you know how that works out. God be with you.

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