Advice needed

Hoppy27
Hoppy27 Member Posts: 2
edited 16. May 2019, 11:54 in Living with arthritis
Hi All,
Im new to this forum, I have been living with arthritis in my spine for years. I turned 50 November just gone. Only diagnosed a couple of years ago. Last week I was told I have osteoarthritis behind both knee caps, I am really struggling with the pain that I am in, the painkillers don't work, I have a TENS machine that does not work, I have had to start to use a walking stick.
I've tried so many different ways of getting help from different charities for a new mattress, as mine is making the pain in my back worse.
I wondered if anyone has any advise for me?
TIA

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hi Hoppy27,

    Welcome to the forum. Sorry to hear you're having a hard time.
    Have you seen the "Living with Osteoarthritis" booklet that can be downloaded from the Arthritis Care website?
    You can download it here:

    https://www.arthritiscare.org.uk/do-i-have-arthritis/publications/223-living-with-osteoarthritis

    The information on painkillers, as well as other treatment options, supplements and ways of managing the condition may be helpful.
    If you haven't already tried different pain relief options it might be worth discussing the amount of pain you are in with your healthcare provider to see if there are other options that haven't been tried yet.
    I'm sure there will be forum members with similar experiences who might be able to talk to you about what has worked for them with regards to sleeping etc.
    Best wishes,
    Ann
  • Mike1
    Mike1 Member Posts: 1,992
    edited 30. Nov -1, 00:00
    Hi, I am a fellow OA sufferer, have degenerative facet joint disease affecting my whole spine, 3 compressed discs in my lower back, 1 detached disc in my neck, sciatica, brachialgia and numerous other health issues. Turned down for any surgery as paralysis is too great a risk according to the Neurosurgeon. As far as meds are concerned you should be referred to a Pain Clinic to see what is best for you, I have been through the lot with various side effects, some quite severe, and am now stuck on Morphine.

    Try contacting the Health and Social Care department of your local Council and ask if an Occupational Therapist can visit you. Every Council is different but an OT from Cornwall Council visited me and helped enormously with the supply of several items of equipment (including a riser-recliner chair) and some advice to help me around the place as I live alone - albeit with my cat! Plus they also write a detailed report which is useful when applying for PIP.

    So far as grants are concerned again your Council may be able to help. If you are ex-forces there are several that you can approach for help, I volunteer with the Armed Forces Bikers Charity as and when I am able, we give grants to Veterans and their families who are in need, normally those who are unemployed or otherwise in financial difficulty.

    Sleeping is very difficult and despite having an electric bed that moves to try to achieve a comfortable sleeping position I manage to sleep better in my chair. I asked my GP for sleeping pills as I get an average of 2 or 3 hours a night but as cannot work and I nod off in the afternoon for an hour or so and again in the evening he said there was no need for me to have them!!

    Good luck getting the help you need.
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Hi Hoppy27 and welcome from me too.

    I have RA and OA and I've had both hips and knees replaced. Pain is something we all understand too well on here. But, could you tell us what you mean when you say the painkillers and tens machine 'don't work'? I ask because sometimes people think they will get rid of the pain and this isn't so. We all have to find a level of pain we can live with and sometimes that means the pain relief is working even though we'd rather it worked a bit more. My best solutions for pain are (a)distraction and (b)exercises. Have you ever had physio? What distracts you ie really interests you and holds your attention? For me it's cricket, baseball (when I can get it) books, puzzles, computer games.

    I don't know how you would get a new mattress though I see Mike has made some good suggestions. In the meantime can you put a board under your current one? Or, depending on where the pain is, sleep sitting up?
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I am sorry you are in so much pain; I have psoriatic arthritis and osteoarthritis and pain is a fact of life. I began back in 1997 and have deteriorated steadily because that is how it goes.

    I presume that you are looking for the Holy Grail of pain relief, i.e. something that removes all the pain, that one can take more than four times per day because it won't affect any other part of the body and renders one pain-free. Sadly it does not exist, all any method of pain relief can achieve is dull the sharper edges thus allowing us to get on a best we can. The stronger the pain relief the more we are removed from the pain rather than the pain being removed from us, after so many years I am so used to being in pain I cannot comprehend how it feels not to be and actually never want to be.

    I cannot help on the mattress front, if yours is sagging then a new one would be ideal (please do not ask for advice on what is most suitable, it is a very individual thing) but the only suggestion I have for funding is maybe one of the local social Credit Unions that are about. They lend small amounts for such things, repayments are negotiable and the interest rate minimal. In the meantime could someone put some boards under the mattress to try and firm it that way?

    For years now I have slept with a pillow between my legs (I am a a side-sleeper) so it supports my upper hip and eases some of the pressure on my lower knee. When I am reading my Kindle in bed I have the same pillow under my knees to ease the strain on them and my lower back. I wake every 90 minutes or so due to pain breakthrough, have done for years and will continue to do so. If by mischance I happen to sleep for a few consecutive hours then getting up is a nightmare as I no longer move naturally in my sleep so my joints seize up.

    Right, I'm off to apply some voltarol as I have been a foolish woman and overdone things today but it's only the OA that's aggravated and that is more easily sorted compared to the inflammation from the other. See you later. DD

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