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pain from Fibro

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  • sarah50
    sarah50 Community member Posts: 119 Pioneering
    Thankyou @Peridot The system is inhumane just when I need to be thinking clearly and getting my case across they have put me in a situation where I can't afford to heat eat or go out at all my symptoms are all worse again, but hey ho, guess the light I was beginning to see at the end of the tunnel was another train. Lol
  • Peridot
    Peridot Community member Posts: 9 Connected
    I am exactly the same. Having to watch every penny, and having to cut back on the things that may help your condition ? And then getting worse because of it. Its a never ending cycle and I am thoroughly fed up with it! Guess our only option is to wait 6 -8 weeks for our MR decision, then another 6-8 weeks to hear back from the courts about an appeal, then another 6-8 weeks until the appeal date arrives then another month or so for their decision? ¯\_(ツ)_/¯ 

    Kinda nice to vent to someone who understands though, so thanks for listening haha 
  • sarah50
    sarah50 Community member Posts: 119 Pioneering
    Ah no worries, I don't vent very often, if I said half of what I think I would get into trouble. I know someone who had to wait a year and a half by the time their tribunal was done, and everybody says it's ok they backdate payment if you win it but it doesn't cover the interest on debts or bank charges, it doesn't make up for the stress and added ill health. I was awarded my pip till Feb 2019 but the reassessment process started in May and Pip was stopped in September. I'm shocked this isn't a third world country, we are one of the wealthiest nations on earth. I feel that it should have continued to have been paid till Feb at least while the appeal was going through. It feels as though they are trying to kill off the elderly and disabled by the back door.
  • ricky1040
    ricky1040 Community member Posts: 121 Pioneering
    We have a system over here that you get paid any negative difference caused by pip changeover for a year. I’m lucky in that regard. The Mr is a joke I read their decision and they literally just didn’t awkniwledge and evidence I submitted. Waiting on my court date. Eeekii @sarah50 how have you been?
  • sarah50
    sarah50 Community member Posts: 119 Pioneering
    @ricky1040 hi, well I'm still waiting for MR about 10 days after I sent the letter asking for it I rang them to see if it had arrived, oh yes they said we have it would you like us to start a MR. The mind boggles doesn't it! So far no news, perhaps they are waiting for me to ring up again lol. Let me know when you get your court date, how are you coping with the added stress?. X
  • ricky1040
    ricky1040 Community member Posts: 121 Pioneering
    @sarah50. Yea am doing ok. I also have a case ongoing against my ex employer and it is stressful :-( the pip one not really cos I feel they lied and I will win the appeal. The work thing is very very personal to me and really difficult to do the necessary admin cos of my health. But I’m trying my best and will get there eventually. 


  • sarah50
    sarah50 Community member Posts: 119 Pioneering
    @ricky1040 glad to hear you are still fighting! Well my MR decision arrived this morning and as expected a fail they have looked at it again and used even less evidence this time to come to the same decision, only two pieces of evidence this time instead of the four they used last time. So hear we go again.
  • Lettybabe
    Lettybabe Community member Posts: 4 Listener
    Just to reassure you it really does get better, my perception of fibro is leading up to the diagnosis takes roughly a year or so, then you have the year with the diagnosis where you can't function, you refuse to accept that this is the rest of your life now and you become suicidal, year two is rough AF because when your mental health is acting up it makes your fibro pain a million times worse but by year 3 you reach a point of acceptance and by that stage you have learnt what coping mechanisms work for you.
    Now before people get super mad at me I suffer with fibro, severe hypersensitivity, ADHD, APD, Narcolepsy, depression, anxiety, PTSD, Disassociative disorder and severe memory problems. I work full time 3 days a week from home and 2 in the office and I try to live my life kind of normally as a way to stick my middle finger up to my conditions. Honestly there have been many instances when I have tried to kill myself even as recently as the start of the year and I know you won't believe me right now but I promise you it does get better. There will never be a day where you don't wake up in pain and you will probably always have to take painkillers (I take 11 different types of pills a day) but believe me when I say it is possible to live your life as normally as possible. If you ever want someone to vent to or want some coping tips then please message me but the best tip I can probably give you right now is, get referred to pain management and experiment with different meds until you are able to find a concoction that works. Always be vigilant with the GP, Never let them tell you about your body just take control of it yourself. I know that sounds crazy but with my GP I have enough knowledge that I can go into the GPs and say "im in more pain due to the cold weather, can you please temporarily up my morphine until its warm again?" you will spend the rest of your life dealing with GPs and you know your body so be forceful. I hope this helps ?
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
  • angel137
    angel137 Community member Posts: 51 Courageous
    @sarah50
    Hi Sarah.
    May I strongly encourage you to get advice and use online help as well, to aid your understanding of the appeals process.
    I found "benefitsandwork" website very useful. Do whatever you are able to but don't worry about the timescale. How long b4 tribunal depends on where you live. You can do another focused submission and send more evidence /supportive letters with it as part of your appeal. Take your time.  You can always bring it with you to the tribunal if you are unable to to it beforehand. 
    In the interim period, try not to be constantly "waiting" mentally. It is tiring. Get on with day to day life and do what you can, when you can.  Don't let it grind you down.  It's a process. 
    Wishing you well and all the best. The truth will prevail.  o:)
  • sarah50
    sarah50 Community member Posts: 119 Pioneering
    Thankyou @angel137 I have been doing lots of research I will be sending in my tribunal request shortly and I'm trying not to let it dominate my life, you are absolutely right when you say that a constant state of waiting is exhausting. The recent drop in temperature has been pretty detrimental and all my symptoms have worsened so been forced to put all non essential tasks on hold. I hope you're having good days.
  • angel137
    angel137 Community member Posts: 51 Courageous
    @sarah50
    I've recently had a few "good" days. It's up and down.
    Then decided to wear a new pair of Doc Martins for the first time (bought on sale).... My legs were wobbly ( from lack of use). Also, I normally wear slip ons/trainers for comfort and convenience. It was like learning how to walk again and resulted in v sore legs. Ouch. Docs are very stiff at first. Didn't think it would be that bad. Don't  know when I'll be wearing those again. :( hahaha. Never mind. Will wait until my legs are stronger. 

    Enjoy the weekend.   o:)

  • maud
    maud Community member Posts: 10 Connected
    @angel137
    Docs are always difficult until they are worn in. Even before I was ill I was reduced to oiling them and bashing them with a hammer to make them comfortable.
  • maud
    maud Community member Posts: 10 Connected
    @Peridot the cruise was lovely but would have been even better if I hadn’t developed pneumonia on the 2nd day.
    I really believe I have Lyme disease, as well as fibromyalgia, which lowers the immune system. Bit academic though as there isn’t a cure for either and the symptoms are almost identical.
    Grandson had a slight sniffle the day we left, I ended up in the ship’s hospital on 2 IVs, oxygen and nebuliser.
    Still I was not downhearted. Saw some lovely things and my treatment was arranged so I could go on some short trips. Lovely HCPs. Made me realise what life could be like if I could afford private medical treatment.
    Plus DH had a very good time. I insisted he didn’t stay with me and I haven’t seen him so relaxed for years.
    I’ve proved I can do it once so now just need to start saving up for another trip. That’s if I’m not blacklisted by insurance companies for my 4th claim in 10 years!
  • sarah50
    sarah50 Community member Posts: 119 Pioneering
    @angel137 Thankful for the lower pain days, I loved my docs although I don't currently own a pair, I've got some magnums at the moment they are good for ankle support but the soles are so hard they make my feet burn, I've been living in moccasins with Ortho inserts so at least my feet ? aren't hurting ? lol Saw my grandson today it's his birthday tomorrow he's 3 and I've just found out there's another one on the way. Happy days. X
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    Has anyone tried decompression bandages?
  • missmuddled
    missmuddled Community member Posts: 6 Listener
    Like @Topkitten and @debbiedo49 I am in exact same boat been three years now and friends have slowly dropped off, I already suffered from anxiety/agoraphobia/PTSD, its just got worst and worst now, the Fibro alone is restricting what I can do, and on top of that the mental health problems just makes it worst.

    So all I can say is that your not alone, everyone thinks i just need to pull myself together, start going out etc...get a job yeah right who wouldn't love there career back I would for one! Even my wife has had enough of me i think, things are difficult there too. But we havent had that discussion yet!! But its coming.

    I dont post much on the forums more a reader just saw your post and the replies and had to say I agree.



  • missmuddled
    missmuddled Community member Posts: 6 Listener
    I too have lived with Fibromyalgia for over ten years through no fault of my own,( I use the word "lived" instead of "suffered" because I refuse to be a victim to this terrible affliction). Although I have many bad days, I have tremendous support from family and friends and this really helps me through my darkest times, and believe me there are many!! I know that exercise is very difficult because of the pain and fatigue of fibromyalgia, but I truly believe that it helps in the long run. I find that I hurt if I do, and I hurt if I don't, but the benefits of the activity gives you that feeling of achievement and control even if it is short lived. It doesn't need to be strenuous or take hours, just anything that allows you to be in control of Fibro not Fibro be in control of you. Hope someone can take heart from this post. LOL. Missmuddle
  • Peridot
    Peridot Community member Posts: 9 Connected
    @maud God, I'm really sorry that happened to you! It is very nice to hear you didn't let it spoil your time though :smile: Glad the rest of your family had a lovely time too! Hope you've managed to recover by now. 

    And @missmuddled I do exactly the same thing. I accommodate my illness,  but I refuse to let it dictate what I can and can't do! Am trying to push myself to do things I want to do - things I would never usually do, because my illness has kinda turned me into a recluse haha So I've started going to craft workshops and have even been brave enough to book a theatre ticket for myself :smiley: I would never usually do these things on my own but I'm being brave and pushing my limits! It might be a little tough on my body, but it is sooo great for my mental health! Just got to make sure I don't go sliding backwards ? It's easily done - especially with the nights drawing in and all that extra rain and cold! 

    Hope everyone is having a pain free (or minimal at least) day! x
  • London_Girl
    London_Girl Community member Posts: 9 Listener
    debbiedo49 I had to comment as on reading your 1st post on this thread I had to check to see if it was me that had written it. Even down to the age lol. I just came in here as pretty new and needed to remind myself that others are in the same boat as me as I'm struggling with all these fibro and I literally see no one bar professionals when I'm up to it or my partner who I find it hard to see as I've got nothing to talk about anymore and my memory is so bad too and then my anxiety kicks in and I struggle to put a sentence together. It's a vicious circle. I personallydon't want to live another 20 years if this is how my life is. Sorry I'm replying to what you originally wrote so others might be bit lost. Think I might look into what you were saying about CBD and vape pen. Sorry for the long winded reply but I never talk to anyone so when I do it's verbal dihorrea lol. I also hope this post is still alive as the t e are a few people I'd like to respond to who have similar stories. I wish everyone a pain free day as is possible :-)

Brightness