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Arthritis Awareness

CosmicCosmic Member Posts: 7
edited 4. Dec 2018, 06:33 in Living with Arthritis archive
Hi,
Thankyou from the bottom of my heart, finally I have people I can talk to, who understand.
Arthritis awareness is non existent, unless you are unfortunate to have to live with it.
The attitudes I have encountered is that if you can’t see it, its not there.
I was diagnosed 12 years ago, aged 36 with arthritis in my spine, I have prolapsed discs and bulging discs. I was told that my spine is the same condition as a 70 year old. I was devastated as I was told it is degenerative. My youngest had just started secondary school and I had planned my future. Also I worried as I was a single Mum bringing up 2 young children.
It isn’t just an old persons disease.
I have had facet joint injections (injections directly into the spine), Pysiotherapy for 12 weeks, 5 x 30 minute sessions of Acupunture.
I was eventually told there was nothing else that could be done and That pain management was the only option.
I am now taking on a daily basis:
Lansoprazole - 15mg -1 per day
Clonidine - 25mcg - 2 per day
Tramadol - 50mg - 8 per day
Naproxen - 500mg - 2 per day
Amitriptyline - 50mg - 1 per day
Amitriptyline - 10mg - 1 per day
Sertraline - 50mg - 1 per day
I have constant pain in my spine, neck, shoulders, hips, legs and now my arms and now having to deal with the Work capability Assesssment Centre again, as Obviously I cannot work.
But they have decided that although I have all the evidence to prove I’ve had treatment etc, that my Gp and myself have made it all up and that there is nothing wrong with me. Basically because I don’t cry and complain about the pain constantly. But I dont do self pity, I am a fighter and will not give in to this disease which is why now I can barely walk.
There are days when I think just take all my tablets and the pain will be gone as I don’t have anyone to talk to.
Unless you live with Arthritis you can never truly understand how soul destoying it can be.
BUT THANKS TO THIS SITE, THERE IS LIGHT AT THE END OF THE TUNNEL.
I now have people to talk to that DO UNDERSTAND.
A BIG THANKYOU FROM ME.

Comments

  • moderatormoderator Moderator Posts: 4,082
    edited 30. Nov -1, 00:00
    Hi Cosmic,

    A very warm welcome to the forum, I’m sorry you have spent so much time having to manage on your own. It makes such a difference when you come here on a bad day and even if you only read a few posts you can feel understood, cared for and most importantly not alone.

    I notice that you have said you’ve been told that pain management is your best option now, there are pain clinics. I can only speak for myself but I had a great appointment with them. They understood, they tweaked my meds and altered some and it worked. The pain didn’t vanish but as the experts with the meds at their disposal they made a big difference. You can always ask your doctor if there are any in your area.

    Do you know if all your pain is linked to your spine? Remember some joints can be replaced and physio for joints can be most helpful.

    I’m pointing you in the direction of living with osteoarthritis in the hope there will be some little gems there to help you. Also consider ringing the helpline on 0800 520 0520, especially for help with ESA.

    https://www.versusarthritis.org/about-arthritis/living-with-arthritis/

    Do keep posting, share your story and get support and advice

    Take care
    Yvonne x
  • CosmicCosmic Member Posts: 7
    edited 30. Nov -1, 00:00
    I was under the local pain management clinic at my hospital, but think they did something wrong when giving me facet joint injections. They give you a sedative injection before doing the facet joint injections, to reduce the pain but they keep you awake and talk to you. But with my last facet joint injection they knocked me out cold, which wasnt meant to happen. I woke up in recovery with nurses rushing to me when I came round. One of the other patients told me that I was out cold for a while and the staff were on edge til I came round. Shortly after this happened I received a letter stating that the pain management clinic had been closed down but I was never told it was because they made mistakes. There is no longer a pain management clinic inmy town, so its basically left to my Gp to try different medications. I have recently changed to the Tramadol to replace Co-Codamol as it was no longer working very well. What people dont seem realise is that if I wasn’t taking any medication I would not be able to move. Even with the medication I am severly limited. I have been told that unfortunately I will end up in a wheelchair. It is very hard to accept my situation as I have always been very independant and would walk absolutely everywhere, now I can’t leave the house.
  • dreamdaisydreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    Hello, it is interesting how we are lumped in with the elderly when we're not, isn't it? I was undoubtedly guilty of the same thing before I became an arthritic because I thought I knew what arthritis was: you could have RA or OA and it only affected the elderly.

    I began with my first arthritis when I was 37, it was one of the auto-immune kinds and my then GP had not one idea about what was going on. I eventually began the immuno-suppressant meds in 2002 and was correctly diagnosed in 2006 with psoriatic arthritis. OA was diagnosed in 2011 and then fibromyalgia some time after that. Having been born with auto-immune issues the psoriatic arthritis was not a surprise but the OA was: I still thought, even then, that you had one or the other. :lol:

    Pain is the biggest hurdle we face in getting on with life. Pain relief isn't and doesn't, the more you take the stronger your tolerance grows and the more you need to achieve less. I am very lucky that my arthritis does not, as yet, affect my spine but as everywhere else twinges and splutters it's a fine line of thankfulness to totter along. I went to a pain clinic and it was not much help, they recommended stronger pain relief (why? It isn't effective) and to use distraction techniques (I have done for years and always will: they are effective). Pain is a very individual thing though, one person's mild twinge is another's total agony.

    I am very fortunate in that I am now retired which makes a big difference and I do not have a family to organise (I knew what I was going to be passing on and decided that one spoiled life was enough). I look very well too - until I move :wink: as I try to get moving after sitting for a while my standard line is 'Not bad for a 59 year old!' and I laugh. I have a rollator for walking in town, a wheelchair dismantled in a cupboard for use on holiday if the dross really has a go and a mobility scooter in the garage, covered in dust and cobwebs.

    Keep talking to us, we all get it because we've all got it. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • BettyMacBettyMac Member Posts: 165
    edited 30. Nov -1, 00:00
    Hi Cosmic

    Maybe I'm reading between the lines but you mention that you are not being believed about the limitations your condition is causing and I wonder if you're having problems with accessing benefits.

    The Citizens Advice Bureau is very skilled at assisting with making PIP applications and dealing with appeals if these are turned down.
    Some CABs have outreach workers who can do home visits.

    I don't know if you've found the Working and Benefits Matters part of this forum yet but there's a lot more information there.

    Good Luck
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