Hi All! I have OA...

Rebeccarockchick
Rebeccarockchick Member Posts: 50
edited 7. Jul 2015, 05:38 in Say Hello Archive
Hi Everyone, I have been reading posts on this site for months now and it has been a great source of help. I have also found the website a useful tool to find out information. I thought it is about time I joined in and said hello and shared my story to help others know they are not alone and speak to others in the same boat. :D I am a 34 year old mum of 2 and up until March this year I was working 50 hours+ a week as a Manager in a Despatch Warehouse. I cannot due to my very long list of ailments and conditions do this any more. Some days I can hardly walk a step. I was diagnosed in Sept 2104 with Ehlers-Danlos syndrome, which is a genetic connective tissue disorder, I have had symptoms all my life. It means basically I lack collagen in my ligaments and other body parts so my joints move around too much. This has caused the early on set of osteoarthritis. I have arthritis in my feet, in my big toe, a terrible bunion, that i should be having surgery on at some point.(straightening and fusion and shortening of bones) I have two bones in my feet that are too long. I also have flat feet. I have arthritis in my knees, my back, my hands and not confirmed but possibly in my jaw. I have degenerative disc disease/trapped nerves/degenerative facet joints,bulging discs...grade 3/4 cartilage loss in my knee, patella alta (my knee caps sit too high) this means they move around too much. I also have a loose body of cartilage floating around my knee and loose tendons. The ehlers-danlos causes you to be super flexible yet be stiff and achey. Every joint and muscle, tendon and ligament in your body hurts .But the OA crunching/grinding is the pain I feel more. It also causes migraines/anxiety...thin skin...you can see all the veins through my skin. The worse pain I have ever felt is last week my left leg doubled in size and was excruciating, I went to hospital and discovered I have a deep vein thrombosis well two blood clots actually..so on top of all all the pain meds for OA I am now on blood thinners! Although I can no longer take certain other tablets! I am remaining positive! I am trying to keep active, eat healthy and try alternative options..sorry for the long post..just wanted you to get to know me..ive have got to know quite a lot of you so far...thank you becks xx 8)

Comments

  • moderator
    moderator Moderator Posts: 4,082
    edited 30. Nov -1, 00:00
    Welcome to Arthritis Care Forums Rebecca from the moderation team

    As mods we are here to help with any problems you may have on the message boards.

    There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

    I look forward to seeing you posting on the boards.

    Best wishes Modonfriday
  • stickywicket
    stickywicket Member Posts: 26,023
    edited 30. Nov -1, 00:00
    Hello Becks and welcome from me, too. That's quite a collection of problems you have there. I know we have had people on here with Ehlers Danlos but not many so they tend not to hang around too long. There are more with hypermobility and a lot more with OA and all that it trails in its wake.

    I have OA as a result of my RA and have had knees and hips replaced very successfully. I haven't ever had a DVT and will try to avoid them :wink: Are you on the blood thinners for life then? That would be tough at 34.

    If you have any specific questions just ask away and we'll do our limited best to answer. Living With Arthritis and Chit Chat are where most people hang out. I hope to see you around.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you - congratulations on taking the arthritic plunge! :wink: I have OA as a result of my other arthritis, and it isn't fun. There are quite a few on here with one or more condition to manage but I don't recall someone with the same list as you - you have a deal on your plate, yes? As you've been reading the forum you know how it works so I don't need to say much more :wink: . I wish you well and hope we can be of assistance. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Rebeccarockchick
    Rebeccarockchick Member Posts: 50
    edited 30. Nov -1, 00:00
    Hi All and thank you for your warm welcome and replies. I do feel I have a lot on my plate and for reasons I cannot work out my list just seems to get longer. Genetics could be one reason, my mum says "she must have eaten something funny when she was pregnant"...bless! I do not think that is it! But yes one of my many Doctors said the best place to be is on forums with the only people who genuinely know what your going through, I can help them, they can help you..support each other. I have searched for Ehler-danlos on here as osteoarthritis, as I have learnt, comes hand in hand quite a lot with eds, so am surprised not more people stick around. I am on blood thinners for 6 months + as it was a spontaneous DVT. There is no reason why it happened and they cannot start testing me until it is dissolved. I have just finally got my stockings after asking for them myself! The hospital could not find any and the Doctor didn't have a clue which ones to give me. They are an important part of the treatment as after a DVT you can either have another one or have a number of problems after. I might just be on tablets all my life yes if they cannot find the reason or the reason turns out I am high risk of blood clots. My leg is still swollen and I can only walk a short distance (I couldn't walk far to start with due to OA, but now can walk even less), quite disheartening. You take one step forward and one step back! So anyways thank you again for welcome and I will see you on the Forum pages hopefully in the near future :D
  • stickywicket
    stickywicket Member Posts: 26,023
    edited 30. Nov -1, 00:00
    You have Ehlers-Danlos, which is a serious disease, and also, as a result, OA. To my very limited knowledge it sounds as though everything else is a manifestation of these – the bunion and disc problems are presumably the OA's work.

    It must feel very depressing when you are so young to be gathering so many problems. I sometimes think I had it easier because, way back when I was diagnosed at 15, patients didn't expect much info and docs didn't give it. So I acquired lots of things along the way which people now have names for (even if they are virtually unintelligible) but which I just regarded as part of having RA. I think, as a result, I felt less 'medicalised' and I think I'm rather glad.

    You seem to have suddenly acquired all your medical problems recently. Is that so? I thought Ehlers-Danlos manifested itself much sooner in life. I'm pretty sure it's an inherited disease but I don't think it's anything to do with what your Mum ate when she was carrying you :lol:

    The DVT sounds like the most pressing problem right now. I do hope they can find out why it happened and deal with that. Well done for persevering on the stockings front. If you need them you should have them.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • Rebeccarockchick
    Rebeccarockchick Member Posts: 50
    edited 30. Nov -1, 00:00
    I know bless my mum! I've tried to explain to her it is nothing she has done but she cannot help, as a mother would, blame herself for my long list of problems, which yes are, now I have learnt since being diagnosed, because of Eds. Ehlers danlos is hereditary and genetic and although some of my family members have slight issues no one has it as bad or have been diagnosed. I have had a range of symptoms all my life, like tiredness, migraines,acid reflux, problems with ligaments in jaw, had to have c section due to severe spd when pregnant, anxiety, foot problems, back pain etc, but it only started to show its true colours age 30 onwards(like something triggers it) think the pain of OA and the wear and tear comes into play and the over worked muscles and ligaments cannot keep up(even the whites of my eyes have thinned and turned blue, called blue sclerea, as they are made from collagen)..this is normal and why it takes doctors so long to diagnose. They have to put all the pieces together.Its very complex to diagnose and often missed for years. I am lucky my joints do not dislocate but do sublax,they could dislocate in the future. I have eds type lll/hypermobility, I have had my heart checked to rule out the more serious forms.And blood test quite a few times to rule out RA. Yes I do believe all my ailments and conditions are from having eds. Although my gran, three aunties and mum all have OA mainly in knees,many have had total knee replacements,like yourself, quite young too. My mum has OA in her knees, hands and back so I often ponder if I did not have ehlers- danlos would I still have got OA? You also sound like you have a lot on your plate to deal with from so young also. I don't get too down about it or try not too I guess like yourself its tough some days but I have dealt with myself as much as I can do and do not sit around too depressed at what I could have done or could have been doing, ok some days looking through disability aid brochures picking out gadgets that i am quite excited to buy, when I should be browsing glossy fashion magazines...makes me feel a little old before my time, but hey ho! Thank you for saying about the stockings i am trying soooo hard to wear them as much as possible, I am still in shock about getting DVT..also worried about the future for surgery as the surgeon was concerned as with ehlers-danlos you can have poor healing and ligaments too loose to heal so I am not sure I will want to face surgery with the fear of having another DVT on top! I know if I need any advice I can post on the forum which is great. Thanks again for replying and the support :D
  • stickywicket
    stickywicket Member Posts: 26,023
    edited 30. Nov -1, 00:00
    I think most OA is not genetic but there is a possibility that some can be http://tinyurl.com/oo47w42 .

    Actually my RA is much better these days. Though the damage has already been done at least life is easier now that it's just Mr SW and myself. (Famous last words – the family are here at the weekend :roll: )

    I'm sure, in your shoes, I'd be worried about future DVTs too despite the fact I've always believed in living in the present and letting the future take care of itself – with the help of a sensible diet, exercises etc. We can only do so much – as you yourself have done with the stockings – then get on with more interesting things :D
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • barbara12
    barbara12 Member Posts: 20,968
    edited 30. Nov -1, 00:00
    Hello Becks, sorry this is another one I am late seeing, welcome to the forum, imglad you have found it so helpfull, and the best thing is being able to talk to people that understand.. :)
    Love
    Barbara
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