Where to begin

Ouch
Ouch Member Posts: 36
edited 1. Apr 2011, 18:09 in Living with Arthritis archive
I've just been diagnosed with severe arthritis in one knee, moderate arthritis in the other knee and developing arthritis in my hips. Not even sure what to do at this point. I am 55 years old and out of conventional employment at this point. I fear that employment will elude me in this economy and in my state of health. I have just registered as self-employed, as I have my own little jewellery business, but that is not going to keep the wolf from the door. My GP has recommended I apply for DLA. Having read over the claim form, it appears that I would more than qualify. My mobility is almost non-existent. When I do move, the pain is unbearable, even with meds. Any helpful hints regarding applying would be most welcome.

I have been suffering with this for over 4 years, but just diagnosed because no one seemed to take my complaints (prior to seeing my new GP) seriously. I was able to see the x-rays and they were frightening. The speed with which the arthritis has advanced and the increase in pain has been incredible.

I was pleased to find this forum and hope that it will provide me with information I need and support from others who know what it's like to live with this sort of constant pain.

Thank you for reading this.
Happiness is being a grandmother!
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Comments

  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    I am sorry to read you have been suffering so long because nobody took you seriously. Quite a few on here have a battle to get their pain issues across to the relevent people.
    DLA is a minefield so it is best to make an appointment with the Citizens Advice Bureau to get help filling out the form as they have a lot of experience. DLA was designed to help people like you but it is also very difficult but not impossible to get a successful claim. It is all about the wording and you must let them know the worse days and the difficulties you constantly face and how the pain prevents you from doing everyday things such as cooking, walking, getting washed and all the help people have to give you. It can be difficult to accept help from others and we tend to struggle on, often in great pain and often we write on the forms we manage to do things when we should put how difficult it is.
    Definately get help filling it in,
    All the best and good luck with the jewellry business too.

    Elizabeth
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • skezier
    skezier Member Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi Ouch,

    Welcome to posting though sorry you have had to find the site.

    With dla the more back up from the hospitals and gp's you have the easier... its never easy though I don't think.

    I hope you have seen or are waiting to see an ortho? This would be to see if a new knee or two could be the answer and if that happened you would regain so much of the mobility so don't think this is it for ever cus it may not be once you have seen an ortho.

    I kinda hope the gp has already referred you but if not ask to be cus its so needed to see what the experts can do. they also may be able to come up with better pain control for you in the mean time. Nice to meet you and hang in there. Cris x
  • frogmorton
    frogmorton Member Posts: 26,740
    edited 30. Nov -1, 00:00
    Hiya

    Ouch!

    Welcome to the forums from me. I do hope you will find them as usauful as l have.

    I expect you have alreday been advised by the others.....and it's really important that you do this, get help to fill the DLA forms in. Dont try to do it alone...CAB is one option, but you will need to make an appt and not turn up 'on spec'.

    Love

    toni xx
    Love

    Toni xxx
  • Ouch
    Ouch Member Posts: 36
    edited 30. Nov -1, 00:00
    Thanks for your replies, Elizabeth, Cris and Toni. I suppose I should say that my name is Martha...just thought Ouch would be a good username. It is something I say with great regularity.

    I have seen the ortho - that's where I saw the x-rays. I am considered too young for replacements, but the ortho said that my mobility is seriously impacted and that the knee is just that bad. I have planned to get in touch with the CAB when I register for DLA. I had been told to always base things on worse day experiences.

    To compound things, I have a weight issue. I was doing really well - going to the gym everyday and eating healthy foods - until the pain started. I still try to eat as healthily as I can, but without the ability to exercise the weight has come back and there is so little that can be done without exercise. The ortho said, unequivocally, that the gym is completely out of the question now. I have been referred to a dietitian and will be seeing him/her on 12 May. The ortho recommended the gastric band because I am unable to do any cardio-vascular exercise. This is not something I would have ever considered in the past, but will now. Problem is, they don't offer it on the NHS where I live. I have contacted my MSP about it. My GP thinks that because this is more of an orthopaedic problem rather than an obesity problem, they should give my case some consideration. I find it so disheartening when I was really in a position of health and maintaining a healthy weight and now that's all gone out the door.

    My jewellery business (I only launched my website back on 11 March) is going pretty well for now. But I will see how it pans out in the long run. Friends always buy in the beginning - it's a matter of finding a larger audience.

    To complicate things even more, my husband suffers from CFS/fibro and bipolar. We're quite a pair!

    Still, I try to find happiness in each day. I live with my daughter, her husband and my adorable 19-month old granddaughter. No matter how bad the pain is, when she runs up to me and gives me a big hug, it makes the pain disappear for at least that tiny moment in time!

    Martha
    x
    Happiness is being a grandmother!
  • skezier
    skezier Member Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi Martha,

    OH flower this too young thing... its not the case it really isn't they do knee replacements with kids if need be. My brother had a thr on both sides at 21. Cus he had to or be bed ridden so ....

    Think the ortho either needs leaning on and the quality of life thing pushed very hard or rally you could do with seeing one more likely to be willing to do you at least one tkr.

    That’s something I think you could chat to your gp about cus this leaving you isn’t fair.

    The weight thing I think a lot of us know that one sadly and maybe the gastric band will help? I still think it might be a bit drastic though so see what the dietitian says on the 12th of May. I know its a long time to wait but better to see what they can come up with then go straight for the band surgery.

    Martha again it might be a different ortho has different ideas on the weight thing as well cus to get you back to being able to move will mean the weight will come off then anyway.

    I don't know why but there is no standardization and its all down to the different ortho's opinions and ideas..... You really should talk to your gp about it all and see if they can help with finding an ortho who doesn't think age and being left useless is the way to go. I get kinda wound up when they say your too young and just leave you to be unable to get about till your at an age when getting out and about isn't so important. Hang in there and its good you have said all this as its a bit like a pressure hose going off, and it sometimes helps to have that yelled out. Cris x
  • Ouch
    Ouch Member Posts: 36
    edited 30. Nov -1, 00:00
    Thanks, Cris. Yes, somehow saying it all on here has made it feel as if a part of that weight on my shoulder has lifted.

    The weight issue is a very real one. I have been fighting my weight my whole life and had finally, since about '97 gotten a hold of it. But, for some reason, the only way I can really lose weight is to combine healthy intake with at least 2 hours of strenuous exercise. Hence the weight gain over the last 4 years. My BMI really is quite horrible and I wasn't surprised when he recommended that I think about the band. I will see what the dietitian and I can work out, though, as that would be a much better way of dealing with things. Until we get that sorted, they won't operate. So, that is certainly incentive. I just don't know what can or will happen without the exercise.

    I am trying so hard to not let this get me down. I have co-codamol for the pain and it helps a little.
    Happiness is being a grandmother!
  • wannabewriter
    wannabewriter Member Posts: 114
    edited 30. Nov -1, 00:00
    Hi Ouch

    Have you ever had your thyroid tested?

    I put on a hell of a lot of weight in a short amount of time, and it turned out I had a really REALLY underactive thyroid. Only eating salads and exercising like crazy got any weight off at all - and now like you I hurt too much to do that exercise!

    Might be worth asking to get it checked :-)
  • dachshund
    dachshund Member Posts: 8,032
    edited 30. Nov -1, 00:00
    Hi Ouch
    i'm pleased to meet you and i hope this forum is helpfull
    to you as it is to me.
    what co-codamol are you on i was on 15 but it did not work so i'm on 30/100.
    i had to give up the gym. take care. joan xx
    take care
    joan xx
  • wannabewriter
    wannabewriter Member Posts: 114
    edited 30. Nov -1, 00:00
    Or have you asked about Orlistat? The GP might consider it, especially if your BMI is very high. I know in my area they favour weight loss drugs over gastric band surgery as it's much cheaper! But I'm not sure how they mix with any arthur drugs...
  • Ouch
    Ouch Member Posts: 36
    edited 30. Nov -1, 00:00
    Hi Ouch

    Have you ever had your thyroid tested?

    I put on a hell of a lot of weight in a short amount of time, and it turned out I had a really REALLY underactive thyroid. Only eating salads and exercising like crazy got any weight off at all - and now like you I hurt too much to do that exercise!

    Might be worth asking to get it checked :-)

    I've pushed for that for years. Thanks for reminding me - I will ask the dietitian when I see him/her! Cheers!
    Happiness is being a grandmother!
  • Ouch
    Ouch Member Posts: 36
    edited 30. Nov -1, 00:00
    dachshund wrote:
    Hi Ouch
    i'm pleased to meet you and i hope this forum is helpfull
    to you as it is to me.
    what co-codamol are you on i was on 15 but it did not work so i'm on 30/100.
    i had to give up the gym. take care. joan xx

    Hi Joan, I'm on 15/500 and it's okay. At least I'm able to sleep sometimes. The pain sometimes make sleeping difficult - no comfortable position! I may need to ask about upping it soon. Thanks for the reply and the info. I didn't know I could get it any stronger.

    Miss the gym - really do!
    Happiness is being a grandmother!
  • Ouch
    Ouch Member Posts: 36
    edited 30. Nov -1, 00:00
    Or have you asked about Orlistat? The GP might consider it, especially if your BMI is very high. I know in my area they favour weight loss drugs over gastric band surgery as it's much cheaper! But I'm not sure how they mix with any arthur drugs...

    I will check with both the GP and the dietitian to see what they think. I really think having my thyroid tested first may be the way to go seeing how my weight loss has been in the past - low intake and at least 1.5 hours of exercise a day required. I've always thought that seemed like a lot! :smile:
    Happiness is being a grandmother!
  • wannabewriter
    wannabewriter Member Posts: 114
    edited 30. Nov -1, 00:00
    I really would push a lot more - all it takes is a simple blood test (which I know costs the NHS just a couple of pounds to do and process, its a really simple one!). I only got tested after getting really stroppy (and being told I was depressed - which I wasn't, although the stroppy attitude probably didn't help...) and then I went to get the result from my shame-faced GP who said I should probably have started treatment 18 months before...

    Docs can be reluctant to test for it, as there used to be a lot of 'bad practice' around thyroid medications used for weight loss purposes (like amphetamines) when people didn't actually have a thyroid problem, which is a very dangerous practice. But don't let them fob you off, you must get it tested as undiagnosed it will start to affect other parts of your body too - and contribute to fatigue and aches and pains!

    :)
  • Ouch
    Ouch Member Posts: 36
    edited 30. Nov -1, 00:00
    Thank you so much for your encouragement. I will talk to the dietitian about it an push for it!

    M
    I really would push a lot more - all it takes is a simple blood test (which I know costs the NHS just a couple of pounds to do and process, its a really simple one!). I only got tested after getting really stroppy (and being told I was depressed - which I wasn't, although the stroppy attitude probably didn't help...) and then I went to get the result from my shame-faced GP who said I should probably have started treatment 18 months before...

    Docs can be reluctant to test for it, as there used to be a lot of 'bad practice' around thyroid medications used for weight loss purposes (like amphetamines) when people didn't actually have a thyroid problem, which is a very dangerous practice. But don't let them fob you off, you must get it tested as undiagnosed it will start to affect other parts of your body too - and contribute to fatigue and aches and pains!

    :)
    Happiness is being a grandmother!
  • caterina57
    caterina57 Member Posts: 1,424
    edited 30. Nov -1, 00:00
    Hi welcome- and we have the diet club here
  • frogmorton
    frogmorton Member Posts: 26,740
    edited 30. Nov -1, 00:00
    Oh Martha

    How lovely a little Granddaughter! I can see why you have plenty to smile about at any rate! Despite all you have on your plate

    Ouch is a great and apt username :grin:

    I really think you have found the right place :wink:

    Love

    Toni xx
    Love

    Toni xxx
  • Ouch
    Ouch Member Posts: 36
    edited 30. Nov -1, 00:00
    I feel very welcomed. Thanks to all of you! x
    Happiness is being a grandmother!
  • barbara12
    barbara12 Member Posts: 21,103
    edited 30. Nov -1, 00:00
    Hi Ouch
    And a very warm welcome to this lovely forum, you really do remind me of me...I am older nearly 61, but I went to the gym for over 20 years..always struggled with my weight...but now it is so hard not being has mobile.
    But I have decided to come up with any exercises I can do ie arms, one leg...some days I cant do them but when I can I feel so much better.
    I was diagnosed around 2 yrs ago, but thinking back to being quite young I did have lots of rheumatics...it does make you wounder..
    I wish you luck with the dla...just make sure you keep a copy of the forms...these will come in later on
    Good luck with everything
    Barbara x
    Love
    Barbara
  • Ouch
    Ouch Member Posts: 36
    edited 30. Nov -1, 00:00
    Thank you, Barbara. It is so lovely to "meet" all of you.

    Funny you talk about problems when you were younger. When I was 12 I had a bone spur removed from the bad knee. And I was always twisting my ankles - maybe my joints have never been happy!

    I am so looking forward to spending more time on the forum. I am happy to announce that I have six commissions for my jewellery that should keep me quite busy for awhile at least. (Fingers, don't fail me now!)

    x
    Happiness is being a grandmother!
  • barbara12
    barbara12 Member Posts: 21,103
    edited 30. Nov -1, 00:00
    Hi Martha
    Could you PM me details of your website, I would love to have a noisy.
    Take care
    Barbara x
    Love
    Barbara
  • Ouch
    Ouch Member Posts: 36
    edited 30. Nov -1, 00:00
    Will do...coming to you shortly!
    Happiness is being a grandmother!
  • constable
    constable Member Posts: 2,115
    edited 30. Nov -1, 00:00
    hi there,

    I have severe arthritis in the hip and arthritis in the lower back, am waiting for a total hip repacement. I do understand how you feel, but I think as already said that you need something stronger. My husband applied for DLA, at first he was refused, but he appealed and got it. Nearly everyone we know is refused at first, you do have to appeal against it.

    You have come to the right place, you will talking to people who have simular problems and will be able to get things of your chest, or just have general chats. There is a diet club going as well, look it up and see. There are a lot of us who need to lose weight due to lack mobility

    Karen xx.
    Karen xx
  • Ouch
    Ouch Member Posts: 36
    edited 30. Nov -1, 00:00
    Hi Karen,

    So good to read your comments! It is so supportive here and I feel as if I have found a good place to find like-minded folks. I will check out the diet club!

    I am going to have a relatively early night tonight. My knees are horrid today (it's damp outside) and as soon as I take my next dosage of meds, I am going to bed!

    Thank you all for the welcome - it is so very much appreciated!

    Martha
    x
    Happiness is being a grandmother!
  • frogmorton
    frogmorton Member Posts: 26,740
    edited 30. Nov -1, 00:00
    Hi Martha

    Just checking in..... to see how you are today?

    Good news about the commisions! well done you...you must be good at it and yes HANDS BEHAVE!!!!

    Love

    Toni xx
    Love

    Toni xxx
  • Ouch
    Ouch Member Posts: 36
    edited 30. Nov -1, 00:00
    Hi Lynn,

    Thanks for your welcome. I am going to check about physio when I see the dietitian. Want to get as much going as I can to help me retain what little mobility I do have!

    Hope you are well today!

    Love,
    M
    x
    Happiness is being a grandmother!