22 yo with osteoarthritis and EDS

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So I just turned 22 a few weeks ago and my doctor sent me for an MRI on my hips because I recently had an x-ray that showed I had developed osteoarthritis in left and right hips, and have congenital deformation of my left hip. This all transpired because I had been having pain in my hips and right knee for about two weeks, the worst point at which I could not stand or move around without being helped for about 4 days. This is by no means the first time this has happened to me as I have experienced similar issues a few times a year at least since I was about 10 years old. In conjunction to the OA, I was diagnosed with hypermobility Ehlers-Danlos when I was 15. I am honestly at a loss of what to do because I have been in physical therapy for a total of 4 years (collectively) since I was 15, I get trigger point injections in my back and neck for shoulder pain due to the EDS and when I get flares it hurts so bad that I am completely debilitated to the point that I can only lay in bed and cry until the pain goes away. I've been on several different maintenance medicines in the past at low doses because I honestly don't think my doctors believed the amount of pain I was in; but now with concrete evidence the damage that is being done to my body from this disease I think my rheumatologist is finally starting to take me seriously. I am now on cymbalta for the pain and depression I am experiencing but it just isn't enough for when the pain gets really bad. I don't know what else to do or ask my doctor and I don't want to seem like a drug seeker asking for pain medicine. I am really freaked out about this being so young and I don't know what to do.

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  • Posted

    I am so sorry to hear what is happening for you.  Whilst waiting 12 years for total knee replacements, my doc put me on endep as that helps much more with pain.  It will obviously take a while for you to have enough in your system.  I was also on cymbalta and it didn't help at all.  I gave it about 3 years and never noticed a reduction in the pain at all. 

    You and I are not drug seekers, you're not.  Of course it would've freaked me out at your age too. I found that the best thing to do was to see a doctor that you feel free to discuss this stuff with.  Either that or gently say to your current doc that the pain is quite expansive and deep, and they should ask you to rate the pain - 0-10, 0 meaning that there's no pain and 10 being the greatest pain that you've experienced. From what you're saying you pain to me sounds like you're at a 9. 

    Let me know if you need more assistance and I'm more than happy to. 

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  • Posted

    Actually, just thinking that a pain management clinic could assist you. If that's available wherever you are in the world.  I'm in Oz

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    • Posted

      Thank you for your kind words and suggestions. I've actually been at a pain management specialist for the past two years. They are the ones who do my trigger point injections for my shoulder pain, which is managed very well at this point. But as far as the pain I have in my hips and legs, I feel like it's been largely ignored until I got the OA diagnosis. At this point I am just hoping for some kind of breakthrough. 

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  • Posted

       I am so sorry to hear about your situation.   Yesterday I happened to get an email update about the condition EDS.   I didn't save that info but I did do a 'google' search on EDS and they have a link to a clinical trial and other info on the condition with a support page and the like.   I don't know enough about it to offer any suggestions as to who to see for help or what specialist is most helpful

       Thoughts and prayers go out to you --I hope you can find the right help/  perhaps a pain clinic can initially lead the way for you

       Unfortunately with the opiod epidemic all over the world it seems that those who truly need a stronger pain med have a much tougher time getting it

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  • Posted

    I'm so sorry that you have had SO MUCH to deal with at such a young age! Your case sounds quite similar to Ben, our former Schwan's food delivery representative who was just 30 at the time of his TWO hip replacements. He had great amounts of pain, a congenital malformation in each hip that has a name but I can't remember it. He went from doctor to doctor seeking help. Finally after three years of searching he was connected with a doctor who examined him and agreed to do hip replacements.

    Ben is now pain-free! ??

    My neighbor had HER hip replacements at age 50. HER mother had HERS at age 60. My neighbor's son is 18 and suffers from the SAME CONDITION as his mom and grandma-- all of which deal with a severe narrowing of the hip joint which is a congenital issue and a hereditary one as well.

    My point?

    Keep checking with different doctors and surgeons. Do your research. You will find a physician that has read about these conditions that require working outside the box to solve.

    Wishing you strength and hope and confidence that you will find that special doctor who is well-read and ready to help you.

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  • Posted

    I am really sorry to hear that you're having so much pain. I don't know if you live in the US or UK or somewhere else but I can tell you that the climate in the US is such that it is very hard to get a doctor to prescribe narcotics for pain. Not only do the doctors like to treat you like an addict but at your age they are going to be very unwilling to prescribe narcotics to you just because you're so young. And this truly is criminal to allow someone to spend years in pain when there are other options out there to help relieve you from your pain.

    As someone else suggested you should seek out the help of a pain management specialist. There are a few drugs to try that are not even narcotics that I'm surprised your doctor hasn't tried on you. One of them is Gabapentin and another one is pregabalin. They do have kind of a bad rap and that it's recently been said that they can affect your brain synapses. On the other hand I know a lot of people have been taking it for a long time with relief of pain. So with those two drugs you kind of have to take the good with the bad. But it's the same with narcotics. Just remember two things: 1. if you do get on opiates remember you are not an addict and 2. you are not addicted you are dependent on the drug. Meaning that doing it will cause withdraw. And there is a significant difference between those two things. Of course let's say you do get a doctor to prescribe you opiates for the pain, you will have to jump through all kinds of hoops because they are always on the lookout for someone to become an addict and use their pain pills in the wrong way. You will have to do things like regular drug tests and pill counts. And you run the risk that your doctor might decide arbitrarily to cut your dose in half or take you off the meds and of course this really leaves you out in the cold (so to speak).

    I wish you well. Please keep us posted on your condition.

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    • Posted

      Thank you for your suggestions. I have never been on gabapentin before but I did take Lyrica for a short while until I couldn't bear the side effects anymore, I have heard gabapentin tends to be more mild with side effects. I live in the US and as you said, it almost takes a miracle to get a prescription for an opioid. Especially due to my age class and having chronic pain, no doctor has been even remotely willing to touch the idea of giving me an opioid. I'm also currently seeing a pain management specialist and they have a strict no-narcotic policy. I know for a fact that my rheumatologist's practice is willing to prescribe narcotics for chronic pain because my mother, who is also a pharmacist, has RA and is seen by a different doctor at the same practice and she gets 40 Percocets every 3 months. Which is honestly way beyond what I would even ask for, but I've been too afraid to say something to my doctor because she has shot the idea down once in the past. 

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  • Posted

    I was just diagnosed with Osteo in 28 joints after 3 years. At first the diagnosis was Polymyalgia Rheumatica and I took Prednisone for 22 months. My GP thinks its Fibromyalgia so over about a year and a half I took Lyrica Gabapetine and cymbalta. The only pain meds that work for me is Tramadol. 4 months ago I was put on Plaquenil which frome the very little reading I can find helps with inflamation. The first month the nausea and diareaha was horrible but it eventually after 4 months has become less bothersome. It was well worth it as at least now I have part of my life back. The pain can now be controlled with much less pain meds and I dont feel as fatigued all the time. I was 57 when it started and 60 now. My grandmother had osteo and my mother has had 2 shoulder and two knee replacements.
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  • Posted

    Hi bwood95,

    I hope you found some help in getting the medication you need to manage your pain.

    I too have OA of my jaw and EDS. I’m 44 years old. I’ve had chronic pain, subluxations, hyper mobility, and skin and wound tearing since I was 16. I just got the results from my MRI today that my left side of my jaw joint is completely deteriorated and bone on bone. It looks like a joint replacement is in my near future.

    Getting doctors to prescribe narcotics can be tricky. I’ve also used tramodol for a number of years and had a tough time getting a doctor to prescribe a stronger narcotic until my new doctor continued with the tramodol and added in a low dose 15mg of morphine once in the morning and once at night. It’s a low dose and really improved my quality of life. Good luck, I’d love to hear an update on how you’re doing.

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