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Newly Diagnosed OA

seebazzseebazz Posts: 9
edited 25. Jun 2009, 01:33 in Living with Arthritis archive
Hi, I was earlier this year diagnosed with a disease called Avascular Necrosis in my hips, which basically is a disease is a disease resulting from the temporary or permanent loss of the blood supply to the bones. Without blood, the bone tissue dies and causes the bone to collapse. If the process involves the bones near a joint, it often leads to collapse of the joint surface. After a lengthy wait, on Tuesday I finally saw an Orthopedic Consultant at the hospital who told me the AVN was at too advanced stage to treat and that Osteoarthritis has now set in on both hips, consequently I can expect my mobility which is already affected to get worse before they will do anything about it, especially in view of my age, 36. I am not sure really how I felt the appointment went as I was really ust tolf to take ibuprofen if the pain gets bad and to only go back if things get really bad, (not sure what they mean by that - being dragged downstairs by my kids!!).
Now, I have a positive attitude towards my condition and keep pretty active but I am still kind of coming to terms with it and wonder about things like fatigue, for example I get times where getting a cup of tea from the table feels like a gargantuan task, I think I am mainly curious about what the future holds, how quickly you can get worse, can diet, weight, supplements make a difference, as well as other things like work, I am desk bound on a computer so try and get up at least once an hour (don't arf move stiffly - try and look cool though), so any advice on work matters like is it a good idea to let ypur employer know or if they can help.
I have had pain and difficulty for some time, but after getting definate diagoses', it still feels like a step into the umknown, so I would really be thankful for any advice that can be given.
Thanks in advance.

Comments

  • katybarstoolkatybarstool Posts: 22
    edited 30. Nov -1, 00:00
    Hi Seebazz

    Welcome aboard. Sorry you have had no answers - your condition sounds quite rare.

    There are lots of wonderful people on this forum, so I'm sure, in time, someone will be able to advise you. Until then, welcome.


    Kathyx
  • edited 30. Nov -1, 00:00
    Hi there, I am also a newbie to OA and this site. I am 31, and although not suffering from the same thing as you, understand the feeling of uncertainty, and lack of information and support from medical profession.

    I don't have any answers for you, but I do think you should talk to your employer. They may be able to help. Do you have access to some kind of occupational health professional where you work that may be able to make suggestions about the way that you work?

    I also spend quite a lot of time in front of a computer, but there is no problem with me getting up and walking about, even popping out as often as I like to avoid getting too stiff in one position.

    Technology can provide solutions sometime to this, for example, what about using a mobile or portable phone instead of a desk phone, so that if you need to be contacted at all times, you don't have to be tied to your desk, and if it is email related what about a BlackBerry or SmartPhone? Just a few ideas.

    Good luck with it.
  • onedayoneday Posts: 1,650
    edited 30. Nov -1, 00:00
    Hi Seebass
    I have just read chocolate doughut thread and have food on the brain, so seebass making me think of seabass, sorry......
    serious matters........i would suggest you ask employer for referral to occupational health who will hopefully say you must have breaks to move about, this then covers you from any manager who is awkward!!.....not sure about colleagues as i get sarky remarks that i can hear directed at me....(this makes me bit upset but also angry so that i will do things to wind them up more!)
    You need to keep moving about......also you may be able to get a more supportive chair......good luck
  • melblandmelbland Posts: 36
    edited 30. Nov -1, 00:00
    Hiya, welcome to the site.

    I don't think there are any tablets/supplements etc that may assist, as my experience with some of these is they do nothing to help.

    Regarding work, yes you need to discuss things with them. You may be covered under the Disability Discrimination Act 1995 and this enables employees to get assistance where they need it for a disability, such as reduced/change of working hours, desk aids, ability to move around, regular rests etc. It is always worth discussing with your HR manager. My take on this is..if you do not tell them, how are they supposed to help?

    I always get weird looks/comments from people at work. One colleague has a father with RA and she said to me that I walk like him, but it can be the ignorance that is harder to deal with and I find this is true. The "able-bodied" people in my office are faster, can carry more things, have no problem with everyday tasks such as using a photocopier, standing or even a stapler...but I certainly do! I had to have my health and safety rep in our office to put an email round for people to be more considerate of me. People would walk past me on the stairs while carrying something, walk in front of me and leave me to clamber down on the floor to refill the photocopier because they do not realise that I suffer. Even though I tell them, the ignorance is still there and this is an issue that I don't think will ever change.

    Sorry I think I am rambling!

    Best of luck and there is always someone here to assist.

    Mel x
  • seebazzseebazz Posts: 9
    edited 30. Nov -1, 00:00
    Thank you for your replies so far, I think the lack of replies initially has come in the wording of my initial message and the fact that AVN is rarer than I realised, though for me it will be the Osteoarthritis that gives me more problems now, with your replies in mind, I have spoken to the people I need to at work and have found them to be pretty understanding, if I need any new equipment etc, it can be ordered and I may take any breaks I need to keep going.

    The main problem I would say for me is the tiredness and fatigue, is this a common symptom with the condition and what is the best way to deal with it, I like to keep as active as possible (and with young children I have no other choice) but it seems as soon as I stop and rest, I find the even to pick up a cup four feet away seems like a massive effort. And at work too I can feel really feel myself slowing down and it’s a real effort to get the energy up again, always seems to be worse home or at work between 12-4pm.

    The other thing is getting comfortable at night, I am finding that the nightime aches and pains and trying to find a position that is comfy in bed seem to be becoming more prevelant, my solution at the moment that seems to work is simply to get up, go downstairs, walk around the lounge and kitchen for a minute or two, take some painkillers and try again.

    Anyway its been nice to hear from people and send best wishes to you all.

    Matt
  • popsqueekpopsqueek Posts: 2
    edited 30. Nov -1, 00:00
    hi,

    I have OA in hips, knees, ankles and back and find life very difficult but I have found that there are a number of organisations that may be able to help. I work a lot at my desk and out of it- I am a teacher so it is pretty much 50 50. I have support from access to work who have provided funding for equipment etc, occupational health through both work and hospital who have helped with my hours of work and simply getting to work too. I also have help from the DLA in terms of mobility allowance. There are things you can do to help yourself to allthough every person with OA is diferent, I have never found that suppliments help but diet has a major effect on me as does temperature.

    I hope that you get the support you need, take care

    A
  • sarahrockfansarahrockfan Posts: 79
    edited 30. Nov -1, 00:00
    Hi seebazz, welcome to the site. Tiredness/fatigue is common. Sometimes getting out of bed is tiring 2 me(can look like a turtle stuck on it's back. I bet a few people can relate to that). Hope you're feeling better. Take care. Sarah x
  • vonskivonski Posts: 1,292
    edited 30. Nov -1, 00:00
    Bumped up for Granter
  • miss_lmiss_l Posts: 138
    edited 30. Nov -1, 00:00
    Thank you for bumping! (although not for me!!)

    I'm 27 and have AVN of my hip, unfortunately my femoral head has started to collapse and the surgeon is doing a hip replacement on me now, i've had it for 15 years so i guess enough is enough!

    It's a difficult disease as not many people know about it and my work would only consider OH until i got to the point requiring a hip replacment.

    I hope things are going well for you
  • vonskivonski Posts: 1,292
    edited 30. Nov -1, 00:00
    Hi

    Must admit I'd never heard of it in hip but I have to watch for it in my feet.

    Glad to help

    Vonski x
  • breanebreane Posts: 392
    edited 30. Nov -1, 00:00
    Hi Seebazz,Welcome to the site. :) I must admit I have never heard of AVN so can't really offer any help on that subject.I have OA and RA and I do find that tiredness and fatigue is a common factor of arthritis.There has been many a night where I have been unable to sleep due to pain and have spent most of the night just wandering about downstairs.Lack of sleep can make you very grumpy too! :x The only thing that I found helped me was a course of steroids.I have been on them about 3 weeks now and I have slept better and have more energy,although my GP is weaning me off them at the moment.Sorry I can't be of more help but I am sure you will get more other helpful replies from others who have AVN. Breane.x :P
  • valvalvalval Posts: 15,897
    edited 30. Nov -1, 00:00
    seebazz wrote:
    Thank you for your replies so far, I think the lack of replies initially has come in the wording of my initial message and the fact that AVN is rarer than I realised, though for me it will be the Osteoarthritis that gives me more problems now, with your replies in mind, I have spoken to the people I need to at work and have found them to be pretty understanding, if I need any new equipment etc, it can be ordered and I may take any breaks I need to keep going.

    The main problem I would say for me is the tiredness and fatigue, is this a common symptom with the condition and what is the best way to deal with it, I like to keep as active as possible (and with young children I have no other choice) but it seems as soon as I stop and rest, I find the even to pick up a cup four feet away seems like a massive effort. And at work too I can feel really feel myself slowing down and it’s a real effort to get the energy up again, always seems to be worse home or at work between 12-4pm.

    The other thing is getting comfortable at night, I am finding that the nightime aches and pains and trying to find a position that is comfy in bed seem to be becoming more prevelant, my solution at the moment that seems to work is simply to get up, go downstairs, walk around the lounge and kitchen for a minute or two, take some painkillers and try again.

    Anyway its been nice to hear from people and send best wishes to you all.

    Matt
    hi the tiredness is bad but does get better when in less pain it is a shock when u get diagnosed u can look at diet, things u can eat to help with anti inflamirory also some exercises to help keep stiffness at bay (help a bit when pain not to bad) so try links on this sight take medication give it a couple of months to work most dont work straight away good luck stay in touch lots of good advice on this site
    val
  • woodbonwoodbon Posts: 4,969
    edited 30. Nov -1, 00:00
    Hello, I have OA in my spine, neck,hips and a few other places! :? I haven't heard of the type you have, but then there are quite a lot of different types of arthritis.

    I'm not surprised you're tired, with a young family to look after, and the pain of the hips, it must bring you down a lot. And I think someone else said, the diagnosis is a shock. I don't think any of us are really prepared for how we'll feel, because its not something we've experienced.

    Now you should rest as much as possible, and let others help, take care. Love Sue
  • stralachlanstralachlan Posts: 40
    edited 30. Nov -1, 00:00
    Hi - I have OA in my knee as a result of osteochondritis dissecans, which is a form of adolescent AVN.

    Fortunately in my case, the AVN didnt progress and cause any more damage, but it did enough as I've now had it confirmed I will need a knee replacement.

    OD is supposed to be rare as well - but my brother had it too so it may be hereditary.
  • sharmainesharmaine Posts: 1,638
    edited 30. Nov -1, 00:00
    Sorry to hear that you are suffering. It must be tough as you are also working. I had to give up work over a year ago. If my brain was fuctioning sensibly I would have sort out help from my employers. At the time I didn't know about the arthritis care site - I may have done things differently. Saying that I could not have continued working full time.

    There are some very good suggestions here and having an occupational therapist is a good idea. When you are able bodied (as most of us once were) it is ignorance that makes others not offer assistance. Once they are aware you may find them being more considerate.

    Maybe a good idea would be for the BBC to run a documentary on people with our condition; how we cope with everyday life; how we deal with pain; how exhausted we get etc. This may raise public awareness. I think unless you are walking with a stick or in a wheechair people think you can cope. I've noticed that since I've had to rely on my walking stick people have been more supportive.

    Good luck to you and I hope you can all the help and support you need not only at work but at home.

    Regards
    Sharmaine
    seebazz wrote:
    Hi, I was earlier this year diagnosed with a disease called Avascular Necrosis in my hips, which basically is a disease is a disease resulting from the temporary or permanent loss of the blood supply to the bones. Without blood, the bone tissue dies and causes the bone to collapse. If the process involves the bones near a joint, it often leads to collapse of the joint surface. After a lengthy wait, on Tuesday I finally saw an Orthopedic Consultant at the hospital who told me the AVN was at too advanced stage to treat and that Osteoarthritis has now set in on both hips, consequently I can expect my mobility which is already affected to get worse before they will do anything about it, especially in view of my age, 36. I am not sure really how I felt the appointment went as I was really ust tolf to take ibuprofen if the pain gets bad and to only go back if things get really bad, (not sure what they mean by that - being dragged downstairs by my kids!!).
    Now, I have a positive attitude towards my condition and keep pretty active but I am still kind of coming to terms with it and wonder about things like fatigue, for example I get times where getting a cup of tea from the table feels like a gargantuan task, I think I am mainly curious about what the future holds, how quickly you can get worse, can diet, weight, supplements make a difference, as well as other things like work, I am desk bound on a computer so try and get up at least once an hour (don't arf move stiffly - try and look cool though), so any advice on work matters like is it a good idea to let ypur employer know or if they can help.
    I have had pain and difficulty for some time, but after getting definate diagoses', it still feels like a step into the umknown, so I would really be thankful for any advice that can be given.
    Thanks in advance.
  • seebazzseebazz Posts: 9
    edited 30. Nov -1, 00:00
    Hi, thank you for your replies, the problem with AVN is that it is fairly rare and in this country there no actual support groups, most of any support groups/forums etc are in the States.

    The disease itself works a little differently to Arthritis in the sense that blood flow will be limited or cease in a particular area and begin to die, the bones in a healthy person will keep rebuilding as healthy as before however in a person with AVN a joint like the femoral head will rebuild in a "deformed" state, thus causing the pain, discomfort and difficulties familiar to all Arthritis sufferers and lead to eventual collapse, but in itself will often lead to OsteoArthritis (as is my case).

    I would be interested to know if anybody has developed other conditions as a result of their condition.
  • nick55nick55 Posts: 119
    edited 30. Nov -1, 00:00
    seebazz wrote:
    Hi, thank you for your replies, the problem with AVN is that it is fairly rare and in this country there no actual support groups, most of any support groups/forums etc are in the States.

    The disease itself works a little differently to Arthritis in the sense that blood flow will be limited or cease in a particular area and begin to die, the bones in a healthy person will keep rebuilding as healthy as before however in a person with AVN a joint like the femoral head will rebuild in a "deformed" state, thus causing the pain, discomfort and difficulties familiar to all Arthritis sufferers and lead to eventual collapse, but in itself will often lead to OsteoArthritis (as is my case).

    I would be interested to know if anybody has developed other conditions as a result of their condition.

    reply

    I have osteo in hips, knees and ankles now. the right hip and knee the worst. but, I saw the physio the other day, and she gave me some exercises which have helped my hip enormously. whilst nothing is an exact cure, by carefully stretching the joints, three times a day have brought me a great deal of relief.
    I was taking diclofenic, twice a day or more, now I am trying to do without them and stick to the exercises she gave me. my hip was going downhill, until I started the exercises. this may be of help to you, if you can get someone to show you. I hope so. have you seen a physio??

    Nick
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