Is it possibel to have EDS (unknown type) Ankolysing spondalytis and fibryo like symptoms?

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So first of hi hope everyone is doing good 😄 and im going to cross post this to the AS group.

My cousin phoned me yesterday to say he had been diagnosed with hypermoblity EDS (Ehlers-Danlos syndromes) and basically his symtoms are much less he just gets the random muscle pains and joint flexibility he is a year older than me so we were close as kids but hes from my dads side of the family so i dont always know everythign medical on that side, one uncle has immune/ joint issues one has immune/skin issues and my dad has stomach issues but i dont know what as hes . an idiot that i cant get rid of basically so i cant ask him as it causes hellish arguments as he doesnt want the blame fo rme being mangled its all my mums fault apparently.

ok so my symptoms

  • Non - axial non radiology As - i have very small amount of spinal signs of hte disease but not enough to measure on the tests its mostly based in my pelvis but my entire spine hurts most of the time.
  • hip replacement due to major injury when erm having personal time with a previous partner my hips just open too wide and it went ping... not sure what actually happened as hospital fobbed me off as i had a over normal range of movement even tho i couldnt walk. AS then destoryed the joint. The As is now destroying the other joint lol

    *chornic pain suggested as fibromyalgia now on my diagnosis

  • ISB - but no acutal pattern basically if i eat its like my wave pattern just kicks in which a physio said was probably my insides were hypermobile like my outsides... which i sort of went "oh ok" and from my knowledge of horses i know how the wave pattern works so didnt ask anymore.

    Lactose intolerance,

  • pain through my hands which is currently on waiting list for carpel due to AS tests but my entire hands hurt my pinkies and whole hand can be almost numb. i have no elbow involvement
  • hypermobile - never diagnosed, my knees snap back my thums touc my arms my wrists and ankles are floppy, im over bendy but not from skill levels i used to do gymnastics could do splits walk overs etc but couldnt do a kartwheel to save myself.
  • my heels fall in or out on themselves, ankles just go, my knees snap back elbows snap back
  • im very good at yoga poses but not overly fit right now due to pain.

    *stretchmarks - if i poke my skin too hard it just becomes a stretch mark mostly on my torso or legs,

  • scars spread - i have old self harm scars that instead of being thin lines a few spread to thick scaring as healing,

    i have a lot of white random little lines liek scars all over, and scars on my knees, knuckles etc that havnt come from any injury.

    *chornic shooting pains andfloating pains,

  • chornic tiredness brain fog and consentration issues
  • anxiety and ptsd ( i put this down to my hip replacement surgery that i wasnt knocked out for)
  • *depression strange moods - i assumed this was just due to chronic everything.
  • a strange one - i cant metabolise drugs like a normal person... paracetamol makes me sick opiates make me chatty more awake hyperactive but dont actually touch the pain. for abotu 12 to 24 horus then they kick in
  • head aches, ear/ eye aches awhen im really in a chronic stage

    *i have to exercise or im stiff and cant walk but when i do exercise im in incredible amounts of pain or feel really really weak like iv ran a marathon when iv only really cycled or done basic weights.

    *healing can be slow on wounds but fairly normal except that most things scar. the skin on my arms never really recovered from a joke someone played on me when they put gaffa tape on one arm thinking it would be funny to pull it off and the top layers of skin came of it was raw for months. now its always flakey and pealy

    *my feet flatten out as iw alk and i havet o curl my feet up to realign the bones or flex my ankles to put them back to right place it almost feels

  • my shoulders hips and ankles have a huge range of movement i can more or less dislocate them and move them around in any awkward position without it hurting. i used to do this with my hips all the time as a kid and they can still do it even the replaced one but i am trying to not do it. my left hip naturally just falls open to a 45 degree angle when im lying or sitting its more comfortable there than straight.
  • my joints crack all the time on their own accord but if they arent cracked they feel "stuck and painful until i crack them myself"
  • I feel like i have some kind of low grade flu all the time, i never feel physically normal - i get fevers or cold sweating or my hands and feet go roasting or freezing

ok thers probably more but i have now wrote a book.... i feel like my doctor thinks im just looking for something to be wrong with me whethers i really just want out the system. and i want to ask advice before i bring thi up to him. my rhumatologist is fantastic the second i said how i felt he said yes it will be fibromyalgia and then tested my wrists for carpel. but the doctor wont give me the only pain killer that works and he just keeps trying to force me into hard core gym exercise and very basic diets. i am over weight but that is from not having been able to exercise for 7 years pre hip replacement till someone took me serious enough to do anything (couldnt walk in the end at all before it) Iv had episodes where my entire body just feels like its curls in on its self and i cant move. i dont really want more issues but having an answer would explain a lot.

if anyone has prior experience or knows if its possible to have EDS on top of AS can you share,

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  • Posted

    sounds like eds to me change DR. Get tests done etc. It can take a long to diagnose. Drs do fob us off. Its in the too hard basket. I have been made to feel like mental patient and fobbed off in the past. Just look for someone who cares about that field of medicine. Keep looking until you find a Dr who takes you seriously. Also find some support groups in yr area for eds.

    Where are you?

    Denise

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  • Posted

    I do suffer a lot of similar problems to you, but sadly I don't have any advice.

    I was diagnosed with writers cramp / RSI/overuse syndrome over 22 years ago. Six months after that , the exhaustion, flue like symptoms, muscle joint problems etc all kicked in and Fibromyalgia was diagnosed.

    Joints all go out of joint with the simplest little excercises. I only do stretches for the muscles and have had to go to a Chiropractor or Osteopath regularly for years to keep me moving.

    EDS was suggested many years ago when an Osteopath could not believe how many times my bones could go out of joint every time he got me to do such gentle excercise. At the time there were 7 types of EDS and there was no help or cure if you were diagnosed with it, so I did not do the Genetic testing.

    I am now living in another town and there is a medical person here, whos wife has been diagnosed with EDS and he is doing a lot of research into the subject, so my current Osteopath wants me to see him as he thinks I have many EDS symtoms. Sadly my family history suggests we do have this genetic problem. I believe there are now about 13 different types and there is help now for the pain, so I will go ahead with the genetic testing this time.

    They are now discovering that there are many more people with this problem than they ever expected. When this local person started researching EDS, most people were not even aware of it. Already quite a few people in our rural town have been diagnosed with it and some are getting help for their pain. I believe it is not a pleasant treatment, but i you get about 3 months pain relief, they all think it is worth it.

    One interesting thing you wrote about was about metabolising drugs like a normal person. I have not done so either, on many occassions and neither did my Grandfather. I would never have thought about a connection with EDS

    I have not had my testing done yet as there is now an 8 month long waiting list.

    Now I do have some advice for you. Your Doctor ! A change is sometimes necessary! Some Doctors can see outside of the circle and some can't. The last thing you need when you are in pain all the time is extra stress. And another opinion is always a good thing. Find a Doctor you feel comfortable with.

    I do hope you are having some good days.

    Report / Delete Reply
  • Posted

    I do suffer a lot of similar problems to you, but sadly I don't have any advice.

    I was diagnosed with writers cramp / RSI/overuse syndrome over 22 years ago. Six months after that , the exhaustion, flue like symptoms, muscle joint problems etc all kicked in and Fibromyalgia was diagnosed.

    Joints all go out of joint with the simplest little excercises. I only do stretches for the muscles and have had to go to a Chiropractor or Osteopath regularly for years to keep me moving.

    EDS was suggested many years ago when an Osteopath could not believe how many times my bones could go out of joint every time he got me to do such gentle excercise. At the time there were 7 types of EDS and there was no help or cure if you were diagnosed with it, so I did not do the Genetic testing.

    I am now living in another town and there is a medical person here, whos wife has been diagnosed with EDS and he is doing a lot of research into the subject, so my current Osteopath wants me to see him as he thinks I have many EDS symtoms. Sadly my family history suggests we do have this genetic problem. I believe there are now about 13 different types and there is help now for the pain, so I will go ahead with the genetic testing this time.

    They are now discovering that there are many more people with this problem than they ever expected. When this local person started researching EDS, most people were not even aware of it. Already quite a few people in our rural town have been diagnosed with it and some are getting help for their pain. I believe it is not a pleasant treatment, but i you get about 3 months pain relief, they all think it is worth it.

    One interesting thing you wrote about was about metabolising drugs like a normal person. I have not done so either, on many occassions and neither did my Grandfather. I would never have thought about a connection with EDS

    I have not had my testing done yet as there is now an 8 month long waiting list.

    Now I do have some advice for you. Your Doctor ! A change is sometimes necessary! Some Doctors can see outside of the circle and some can't. The last thing you need when you are in pain all the time is extra stress. And another opinion is always a good thing. Find a Doctor you feel comfortable with.

    I do hope you are having some good days.

    Report / Delete Reply
  • Posted

    I do suffer a lot of similar problems to you, but sadly I don't have any advice.

    I was diagnosed with writers cramp / RSI/overuse syndrome over 22 years ago. Six months after that , the exhaustion, flue like symptoms, muscle joint problems etc all kicked in and Fibromyalgia was diagnosed.

    Joints all go out of joint with the simplest little excercises. I only do stretches for the muscles and have had to go to a Chiropractor or Osteopath regularly for years to keep me moving.

    EDS was suggested many years ago when an Osteopath could not believe how many times my bones could go out of joint every time he got me to do such gentle excercise. At the time there were 7 types of EDS and there was no help or cure if you were diagnosed with it, so I did not do the Genetic testing.

    I am now living in another town and there is a medical person here, whos wife has been diagnosed with EDS and he is doing a lot of research into the subject, so my current Osteopath wants me to see him as he thinks I have many EDS symtoms. Sadly my family history suggests we do have this genetic problem. I believe there are now about 13 different types and there is help now for the pain, so I will go ahead with the genetic testing this time.

    They are now discovering that there are many more people with this problem than they ever expected. When this local person started researching EDS, most people were not even aware of it. Already quite a few people in our rural town have been diagnosed with it and some are getting help for their pain. I believe it is not a pleasant treatment, but i you get about 3 months pain relief, they all think it is worth it.

    One interesting thing you wrote about was about metabolising drugs like a normal person. I have not done so either, on many occassions and neither did my Grandfather. I would never have thought about a connection with EDS

    I have not had my testing done yet as there is now an 8 month long waiting list.

    Now I do have some advice for you. Your Doctor ! A change is sometimes necessary! Some Doctors can see outside of the circle and some can't. The last thing you need when you are in pain all the time is extra stress. And another opinion is always a good thing. Find a Doctor you feel comfortable with.

    I do hope you are having some good days.

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