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pain from Fibro

livonialivonia Posts: 57Member Talkative
edited September 2018 in Ask a chronic pain advisor
hello I am  new here.  I am struggling with pain from fiibromyalgia.  Nothing seems to work including the drugs my gp has given me.  I am have severe anxiety.  how do others cope?  Do  you find that a lot of people don't understand.  I feel that my friends are getting fed up of me which is isolating me.  I have tried telling them to google my condition.  Another friend thinks all my problems will go when i go back to work - she said you need to get a job.  makes me so sad.

Replies

  • Chloe_ScopeChloe_Scope Posts: 1,368Member Chatterbox
    Hi @livonia and welcome to the community! Thank you for taking the time to share this with us and I am sure many community members will be able to relate! I am sorry to hear that you are struggling, the community can try and support you during this time. Hope you are having a good day, if you need anything then please be in touch!
  • Pippa_ScopePippa_Scope Posts: 5,740Administrator Scope community team
    Beautifully put, @drb78!
  • debbiedo49debbiedo49 Posts: 2,493Member Brian Blessed
    I do that to too I say my battery is running low lol. Have just heated up a fleece blanket in the dryer to comfort my painful body and recuperating on the sofa after tackling housework. Ugh!


    I am a fibrowarrior!
  • MisscleoMisscleo Posts: 473Member Chatterbox
    Iv also had fobro.for years and yes friends and family cant be bothered.
    There will always one who says "cant you walk any faster"
    Iv starting reminding them they may get fibro themselves 
  • Brett_BabsBrett_Babs Posts: 2Member Listener
    My wife got tested for Fibromyalgia and scored 18 on the pain point test..I've been through a work accident,cancer,spinal collapse,life threatening anaphylaxis to both local and general anesthetics.
    My wife helped me through it all and now it's my turn.
    She has hypermobility in both arms and legs, Chronic pain all over (waiting for the pain clinic ) severe asthma(verging bad COPD, high blood presure ,her thyroid is going ape swelling to the point of chocking(awaiting c.t. or MRI scan)
    Got a PIP interview in a week or so....
    And that's not even all of it....
    No family support, no friends to help...surprising how fast they disappear!!
    Fun Times ahead...
     :s  :s


  • Pippa_ScopePippa_Scope Posts: 5,740Administrator Scope community team
    Thanks for sharing this with us @Brett_Babs. I hope you find support in being a part of our community among others who understand- and if we can be of any assistance, please do let us know.
  • debbiedo49debbiedo49 Posts: 2,493Member Brian Blessed
    I was just at a physio assessment and they said I can’t help you with fibro it’s a mystery to us. But I can help you with one symptom in one area. Typical NHS! Yes I will take any help please. 


    I am a fibrowarrior!
  • maudmaud Posts: 10Member Whisperer
    Hello
    I have just joined. I have been diagnosed variously with Lyme Disease (definitely had it twice when working in Africa for many years), ME, CFS and fibromyalgia, ‘it’s all in your head dear’.
    I am really struggling with chronic pain, all over my body. On a good day I can walk for about 10 minutes until the pain stops me. On a bad day I struggle to get out of bed.
    I’ve given up on the NHS. Too unwell to attend pain clinic. Physio made me much worse as they insisted I ‘work through the pain’. GP treats me like a junkie for taking cocodamol.
    I am retired, don’t think I will ever get better. Luckily have a husband but feel guilty about how much he has to do for me.
    I have tried CBD which initially helped but doesn’t seem to any more despite advice from a very good fb group.
    Sorry I sound negative but going through a very bad flare and it is so difficult to feel positive when pain is dominating my life and I can’t even recognise the person I have become.

  • debbiedo49debbiedo49 Posts: 2,493Member Brian Blessed
    Feel your pain fellow fibromyalgia warrior


    I am a fibrowarrior!
  • PeridotPeridot Posts: 8Member Whisperer
    I'm really sorry to hear that. I totally understand how hard it is to stay positive during a bad flare up. I have just come out of a bad one, and I just completely gave up with everything. Stopped caring for myself, distanced myself from my family - I just had no energy or patience for anything. And the pain was intolerable!
    The one thing that worked for me during that God awful period was CBD in a vape pen that I got off the internet. I used to use a dropper and put it under my tongue, but like you it stopped working pretty quickly. But this CBD pen was an absolute lifesaver for me! Worked so much better on me than the dropper and works out cheaper too :smiley: Started off on the 300mg strength, and really helped me out, and I'd tried pretty much everything to ease my symptoms with varying degrees of success haha. Can give you the site name if you want it. Just let me know :smile: I have also found mindfulness to be very helpful, but didn't have the patience for it this flare up lol

    I really hope you start feeling better soon. Sad to hear what a bad time you're having, but it sounds like you have a lovely supportive husband which is fab! Sometimes one person who understands what you're going through can make all the difference.

    Sending gentle hugs to all! <3 
  • maudmaud Posts: 10Member Whisperer
    Thank you Peridot and glad the vape pen is helping you.
    i have been thinking about vaping as you don’t need to leave a gap between it and other Meds so info about what you are using would be so helpful.
  • debbiedo49debbiedo49 Posts: 2,493Member Brian Blessed
    @sirenx I have agorophobia, panic disorder, anxiety and depression and right now I don’t know which is fibromyalgia and which is the rest! I’m taking hot flushes which have gotten worse when I’m outside the home and I don’t know if it’s fibro or something else. How on earth do people know which is which? I’m asking because my g p treats me one condition at a time, I’m going to be 50 this year and I’m concerned it may be menopause but I’ve had hot flushes for a long time with my anxiety or so I think.


    I am a fibrowarrior!
  • PeridotPeridot Posts: 8Member Whisperer
    Hey @maud, glad I can be of some help to you :smile:

    I got my CBD vape pen and liquid from the Vape UK website. I got this one here which came with 300mg CBD oil as I felt the package with 100mg CBD oil wouldn't be strong enough for me. On this site I think the strongest they sell is 500mg, but have seen up to 2500mg elsewhere! Obviously the stronger you want it, the more expensive it is. I have found that the 10ml bottle lasted me about 2 weeks, and that was with a fair amount of usage per day.
    My pain was so bad - up to a 7 on this pain scale (baring in mind that an 8 is comparable to natural childbirth), and I found that 300mg was the perfect dose for me. Might take a bit of experimentation to find what your body needs. 
    I feel like the CBD also helped with my depression and anxiety as well a pain, but may just have been the ease of the pain that did that hehe 

    Really hope you manage to find something that works for you! Although fibromyalgia sucks, it's nice connecting with people who are going through exactly the same thing as me! Makes me feel not so alone :3

    Gentle hugs to all! <3 
  • maudmaud Posts: 10Member Whisperer
    Hey @peridot l was looking on the Simply CBD fb group as I buy my oil from them and saw they recommended Little Hemp Shop for vape oil.
    I then discovered I could buy the vape oil, more of the ‘normal’ CBD oil, which I need, and Fiddlers Elbow grease balm, which I also use, from their shop and only pay p&p once.
    I ordered a top up CBD oil, 400mg, to add to my normal, low nicotine vape juice. I’m a bit addicted to it but think with such a low nicotine content it’s more like a comfort thing.
    Do you also take CBD oil under your tongue or just vape it ?
    I’m not sure what to do and think experimenting will be required.
    Going on holiday on 5th October. We have a 13 year old grandson with SEN living with us so my poor husband has such a lot to cope with. 
    Grandson is staying with our eldest daughter as he does occasionally so we can get a break.
    I was feeling better last year and booked a log cabin in Iceland for a week. Of course when the time came I realised that if I managed to get there I would spend the whole week recuperating for the return journey. Luckily insurance paid up so booked a cruise to Norway, leaving from Tilbury, around 2 hours drive away. Determined to go whatever I feel like as will be quite happy looking out of the window at the fiords while my husband can enjoy walking. I am going to take my wheelchair so hopefully can get off the boat a bit but really want him to have a break and not spend all his time pushing me around.
    So hoping the vape will help, I’ve bookmarked the site you mentioned in case it doesn’t,  and should hopefully not set the smoke detectors off if I have an occasional puff in our room.
  • debbiedo49debbiedo49 Posts: 2,493Member Brian Blessed
    What is elbow grease balm please?


    I am a fibrowarrior!
  • PeridotPeridot Posts: 8Member Whisperer
    maud

    Sounds like you've got an awful lot on your plate at the moment! What a terrible time for a flare up :'( But that cruise sounds absolutely divine! Definitely want to do something like that in the future when I can save the money. Soo much beautiful scenery :blush: Hopefully the new stuff you've ordered will make enough difference for you both to enjoy the trip.

    As for the CBD oil I used to take it under my tongue, but 1) it stopped working for me not long after starting taking it, and 2) it was too expensive to make it a permanent solution. The little 10ml bottle didn't even last me a week! So just vaping for me at the minute. Although I've not had to use it since that awful flare up died off :smiley: Just using medication and my electronic blanket if the cold and damp gets to my joints. 
    Definitely going to have a look at the fb group you mentioned and see what else that company has to offer. So thanks for the tip! Always dubious about buying stuff like that online as not sure how reputable the sellers are. So always glad to hear reviews from other people hehe 
  • debbiedo49debbiedo49 Posts: 2,493Member Brian Blessed
    Would you say that vaping is a healthy thing to do?


    I am a fibrowarrior!
  • PeridotPeridot Posts: 8Member Whisperer
    I know it's not the best thing to do, but it is better than proper smoking. And after everything I have tried, I am willing to make the sacrifice if it means no pain haha 
    I guess it also depends on how much you use it? I don't even use it everyday now. Just have a little puff if I feel the pain getting too much to manage.

    Maybe do a little research on it if you're worried about how it could negatively affect your health? I'm sure there's lots of info on google :smile:
  • ricky1040ricky1040 Posts: 72Member Talkative
    hey all. its really tough this condition. some days i feel like am making progress others am a mess. but as far as attempts im making to try and improve things iv started taking supplements iv researched. vitamin b12 to boost energy levels and a thing called nuero rest has an indrediant called htp5 and melenoma and other things. its for bedtime and has helped with sleep. i was on extreme painkillers. i still am but im trying to reduce dose as im not sure if the tablets make me sicker than the pain now. anyone else got any tips. 
  • sarah50sarah50 Posts: 119Member Chatterbox
    I stopped taking prescription painkillers because I felt that the side effects were out weighing any benefit, I am coping generally by using Epsom salt baths a good vitamin supplement, heat packs etc. But I have just been refused pip because I am not taking anything and am not under a specialist. Do they expect us to be proactive and look after our health as best we can or do they think we should just do things that don't work and sometimes make us worse just because it ticks the boxes they think need ticking?
  • ricky1040ricky1040 Posts: 72Member Talkative
    makes me sick when i hear genuine people are being treated like this. can i ask what vitamins u take?
  • sarah50sarah50 Posts: 119Member Chatterbox
    It's a woman's health multivitamin and mineral complex they do one tailored to men as well. I don't know if they really help but they should cover me against any deficiency. How are you doing today?
  • ricky1040ricky1040 Posts: 72Member Talkative
    hey sarah sorry only getting back i have turned off notifications on here as it goes mad. im cool. im in the middle of trying to reduce my pain medication so its a bit up and down. but the lines r so blurred now between fibro and side effects i dont know which is which now. i know i didnt get that many sode effects when j started the tablets but doctor says taking them long term it can come later. i am willing to try anything to feel better. so im giving it a go. i went down from 400mg tramimax to 300mg. a week at that now. its been bit rough. cramps and fever but i got there. i am taking b12 supplements and htp5 at night with melatonin. i am but scared to reduce more but im gonna start today. just down to 250 for a week and 50 more. once i get down to 200mg half my dose imma stay there for a month and see how im feeling and ajust accordingly with doctors advice. i think i can tell difference in symptoms. my fibro pain is like a burning tingling in joints and like a throbbing in muscles and the extreme tiredness and i think the tanleys witdrawel is like fever and cramps. 

    im a mess lol. i can only laugh or id cry. i still love life tho. imma beat it. how about you. you feeling anyway good?

    regards


    ricky
  • sarah50sarah50 Posts: 119Member Chatterbox
    Hi Ricky, firstly well done you for going through the struggle of reducing your pain meds, My Gp is worse than useless and only offers me paracetamol and ibuprofen and that's the only reason I'm not taking anything. Don't try to do it too quickly, it's ok to take a bit longer to reduce as long as you are going in the right direction. I am having a flare up at the moment and my depression is creeping up, things just getting blacker since they stopped my pip. It's hard to get up in the morning. I just don't want to. I have to remember it will pass. My other half is taking me back to the doctor next week so I'm sure he will offer me antidepressants and I will be back on that merry go round. Lol. Sorry that was a bit full on. Always here if you want to chat ignore my waffle. Regards Sarah
  • debbiedo49debbiedo49 Posts: 2,493Member Brian Blessed
    How can you tell which is fibro anc which is the meds please? I struggle with knowing which is which buf cannot bear the pain reducing the meds. Are you not still in pain with less meds or no meds? I can’t function with pain from fibro I just have to check out and stay in bed miserable and hopeless.


    I am a fibrowarrior!
  • sarah50sarah50 Posts: 119Member Chatterbox
    I think its a very individual decision and you are best place to know. For me strong pain meds are not something I want to take, all the time, I do wish my doctor would give me some for when everything else fails. so if that means checking out and going to bed and using other techniques then I just have to try. The side effects of Amitryptaline other antidepressants and pain meds left me feeling spaced out, sick, sleepless and after a while in just as much pain. Everybody is different. I hope you're having a low pain day.
  • ricky1040ricky1040 Posts: 72Member Talkative
    hey debs,

    um its a tricky wicket. my fibro pain tends to be like an intense burning feeling in joints and lethargy and difficulty sleeping and a lack of any concentration and forgetfulness. the meds caused tremors and burning up sweating but more recently i started getting crazy bad headaches and i ended up on max pain killer dose as it was being misdiagnosed for a while. but they got to the bottom of it and i have thoae in check. so i want to be best shape possible so im trying a reduction in pain killers. its been a really rough few weeks. but i think av come out the worst now. but next week im going to attempt come down some more. then id be back to a more managable dose and hopefully be better over all. its really tricky. speak to ur gp get their advice but you know ur body. if u think its right for u. insist on it but say ud like their expertice rather than doing it alone. if it dorsnt work out for me ill go back up in dose. its just a case that i wanna have the best quality of life i can. considering fibro this can be a challenge but i am determined to make best of a bad situation. sarah sorry to hear ur blue. i went to counselling about three years ago and it really really helped me. however i went private the nhs one didnt care they literally where obvious in it too. just a pay cheque but the private one called collete. she was a god send. taught me behaviour therapies and coping mechanisms. it was pretty life changing. im without a real depressive episode since i did that. really positive experiance. not saying all nhs workers are bad tho. am sure that they are mostly very good. just a bad experiance i had. 
  • sarah50sarah50 Posts: 119Member Chatterbox
    @ricky1040 Thankyou I managed to get a few phone sessions for my depression but as you know the worst thing about depression is when your at your lowest it's impossible to ask for help, but I did learn some coping techniques, I'm ok at the moment but feel like things could slide. I wish you all the best with your next reduction, if nothing else we are strong.
  • angel137angel137 Posts: 51Member Talkative
    @sarah50
    Hello. With regard to your PIP, I hope you are doing a MR and are continuing to appeal their decision. 
    From your post, it sounds like you were already on Pip. If your situation hasn't changed and you're still experiencing the same things, you should get that decision rectified through appeal. 
    Time and again they have tried to use that type of reasoning when I've applied for these benefits: "You don't have a specialist", "you're not on heavy medications and painkillers"= you must not be in pain. It's ridiculous. There are very few specialists and none in my area. 
    I managed to get two decisions changed at MR stage. I handed in more supporting evidence but I also did a reasoned submission as to why their decision was inaccurate and wrong. I have a long award now. 
    Don't worry. Unfortunately, many ppl have to go through this. It should be alright in the end. Hang in. 
    Best wishes 
  • sarah50sarah50 Posts: 119Member Chatterbox
    @angel137 Thankyou for your kind words. I have submitted an MR because of the time restraints I had to submit it without the benefit of the report, I now find out that although DWP say it should take 6 to 8 weeks they don't work any such time constraint and I'm now just waiting. I was thinking of sending them another letter which specifically answers the bull that they used to justify the refusal but I don't want to come across as though I'm overly critical of the system but I really want to say how wrong it is.
  • PeridotPeridot Posts: 8Member Whisperer
    I am currently sat down at my laptop trying to write a letter to the DWP to be used for evidence for my MR coming up. I can't see it making a difference, and it makes me angry and upset to reread the absolute rubbish they said about me in their decision letter. 
    I would say that it is worth getting help from a professional body to help you with the process. I have been in contact with a lady from Welfare Rights, who has advised me about what to expect from my PIP experience. She said that they talk absolute garbage in their decision letters, and that they upset a lot of people for this reason. She also said to me that the majority of MRs get knocked back too, so not to pay for drs letters or the like as they are unlikely to make a difference.
    It was added that when it comes around to the appeal stage, we are more likely to get a favourable decision as it is assessed by an separate body to the DWP who have the good sense to see our conditions for what they are. So it sucks, but I was advised that if I could be patient and wait all those weeks for an appeal, I was more likely to see positive results.

    Sorry you're having such a rough time, bu know that you are not alone. Totally there alongside you haha
  • sarah50sarah50 Posts: 119Member Chatterbox
    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
  • PeridotPeridot Posts: 8Member Whisperer
    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 
  • sarah50sarah50 Posts: 119Member Chatterbox
    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.
  • ricky1040ricky1040 Posts: 72Member Talkative
    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?
  • sarah50sarah50 Posts: 119Member Chatterbox
    @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
  • ricky1040ricky1040 Posts: 72Member Talkative
    @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. 


  • sarah50sarah50 Posts: 119Member Chatterbox
    @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.
  • LettybabeLettybabe Posts: 4Member 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 🙂
  • debbiedo49debbiedo49 Posts: 2,493Member Brian Blessed
    Thank you


    I am a fibrowarrior!
  • angel137angel137 Posts: 51Member Talkative
    @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:)
  • sarah50sarah50 Posts: 119Member Chatterbox
    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.
  • angel137angel137 Posts: 51Member Talkative
    @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:)

  • maudmaud Posts: 10Member Whisperer
    @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.
  • maudmaud Posts: 10Member Whisperer
    @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!
  • sarah50sarah50 Posts: 119Member Chatterbox
    @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
  • debbiedo49debbiedo49 Posts: 2,493Member Brian Blessed
    Has anyone tried decompression bandages?


    I am a fibrowarrior!
  • missmuddledmissmuddled Posts: 6Member 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.



  • missmuddledmissmuddled Posts: 6Member 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
  • PeridotPeridot Posts: 8Member Whisperer
    @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_GirlLondon_Girl Posts: 9Member 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 :-)
  • sarah50sarah50 Posts: 119Member Chatterbox
    @London_Girl hi don't apologise it's good to get things off your chest, we tend to bottle things up because we get sick of moaning about the same old stuff. You are definitely not alone. I love my husband dearly but we have very little to talk about and the intimate side of things has gone because of the care I need and the pain of being touched. This condition robs us of so much more than our health. All we can do is all we can do. I used to worry about the housework not getting done but now I save what energy I can to do one nice thing for me and if I can manage the dishes or the hoovering that's a bonus if not tough. Hope this helps x
  • debbiedo49debbiedo49 Posts: 2,493Member Brian Blessed
    @London_Girl and anyone else with chronic pain please feel free to message me on here. It’s  good to talk. I walk approx 30/60 minutes 5 days a week come rain or shine to get my exercise and practice mindfulness. It can be exhausting but I feel its achievable. If I didnt have plantar fasciitis then im sure I could do more but this is very restricting. Walking is free and I can do it when I want. It’s  a big deal for me as I have  agorophobia and still have some symptoms. I can only do set journeys walks by myself. Anyway just find something you can do with ease and build it from there. Good luck 


    I am a fibrowarrior!
  • missmuddledmissmuddled Posts: 6Member Listener
    I understand that many fellow fibro sufferers cannot take exercise, and fully appreciate how debilitating this disease is. Therfore apologise to anyone if my comment made them feel inadequate, it was not intentional. I was having what I call a "LIGHT ON DAY", (a good day) when I wrote my post, & wanted to share my positive feelings. I liken my fibro to a light bulb; "LIGHT ON" being able to see light at the end of the tunnel & do what I can when I am able to focus on the good things; but on "LIGHT OFF DAYS" I am in the darkest place and feel like I am stuck in a never ending dark tunnel of pain, confusion, & despair. So fellow fibro sufferers let's try to keep that positve light switched. Here's to many "LIGHT ON DAYS.😎🌞👍
  • TopkittenTopkitten Posts: 894Member Chatterbox
    I no longer get "light on" days, every day now is bad or worse. In the last few weeks I have had problems with the only really effective neural pain killer which resulted in violently throwing up causing yet more pain and problems just from the movement involved. I have had half a dozen reports to the surgery stating it imperative a GP visit me to discuss issues and I spent hours last week trying to telephone the surgery just to get a busy signal. The reports never get read though, just filed away by reception.  Finally today I have got through and arranged a visit but they refused to discuss why, yet again, they have screwed up my repeat meds and sent no prescriptions through to the chemist despite ordering 10 days ago. In frustration I stated I would this time make an official complaint which made things worse. Firstly I got the idiot doctor who continues to talk to me to arrange things but whose main function is to deny any involvement or mistake. He has never read my notes and always tries to put me back onto a regime that previously failed simply because "rules is rules". In the past he has also put me back onto meds that caused me problems because they were cheaper once again without reading my notes. Today he even lied about his position as being one of the senior practice doctors, lol! Oh yes, he then cancelled my visit and changed it to a doctor he said had seen me before and it might be tomorrow. I did point out that when he arranged that last time the doctor was actually was off sick and I got a locum instead and he didn't know. He then insisted I had seen this doctor before and refused to budge. As I said, he then lied about his position and denied ever changing my meds. He also refused to discuss medication and said the GP would sort it out. IF I see the doctor tomorrow it will take 5 working days to get the prescription to me and I only have patches to last until Sunday because they have screwed up..... AGAIN!!!!

    As for support, I get none. My friends deserted me one by one over the first 5 years of illness and now my family have pretty much done the same. None of them have ever really understood the issues, let alone the condition. My son did call today but can't see me for a month or so. My eldest daughter and her kids were supposed to visit me during half-term last week but I never heard from them let alone saw them. My sister stopped talking to me in April and my younger daughter hasn't talked to me for 4 years. I used to get help and support from mum but she died 2 years ago. As for the health and support services.... no help from them once they have made a big mistake, lied to cover it up and then refused to help. That's what has happened with Social Care, Orthopaedics, the Pain Clinic and the GP surgery. They only make minimal efforts when I complain, wait untl the fuss dies down then ignore me again.

    No, no good days any more, I just spend ALL my time in a recliner chair in front of the TV. I eat and drink only when I can bear to cope with the pain and withdrawal issues movement causes. A few weeks ago I was treated in MAU for dehydration and I am rapidly going the same way again.

    TK
    I am here to kick ass and chew bubblegum... and I am all out of bubblegum -- They Live 80 something cult film.
  • missmuddledmissmuddled Posts: 6Member Listener
    Topkitten.@missmuddled So sorry to hear that you no longer have "LIGHT ON"days. It seems as if every one has given up on you and no longer listening. It is so frustrating when no-one seems to want to know how feel, and are fobbing you off contInually. It is very difficult to find meds that work long term. I have had fibro for the last 10 years and probably had most of the usual meds, only to learn that they only work short term, and often have really bad side effects. I have found that accupuncture, warm baths in Epsom salts and gentle exercise are the best ways for me to cope. I am lucky enough to have s supportive family and G.P, and am sorry to hear that you feel alone. I have had a lot of flare ups recently due to surgery, have had major set backs and am in a lot of pain, I cannot have my warm baths or take any exercise due to being in plaster from toe to thigh. My "ON LIGHT" is flickering but I am determined not to let it go right out or let this beast of a disease get the better of me. I am focussing on that long, hot bath with warm flickering candles and a nice glass of wine. I hope you find the support you need, and that your "LIGHT ON" switch starts up again. You are not alone out there. LOL missmuddled.  
  • debbiedo49debbiedo49 Posts: 2,493Member Brian Blessed
    I literally cannot feel my finger scrolling here 😂 


    I am a fibrowarrior!
  • ricky1040ricky1040 Posts: 72Member Talkative
    Top kitten that sounds horrendous. I feel for u. I do get good days and still really struggle so i dont know how u do it. Atm tho im having a sustained period of ilnness. Hadnt slept for 3 days so have raken sleping pills to get a little rest. Felt like i was losing my mind. I was drifting and get this shuddering feeling and wake gasping then repeat over and over during the night. Its horrible. Has anyone had this. Like literallly feel tourself jodding over and u get a bolt of pain and shuddering. ?
  • TopkittenTopkitten Posts: 894Member Chatterbox
    I can't say I have had that @ricky1040, though I have had an awful lot of things. I guess that there are an infinite number of ways to suffer.

    Most medications are supposed to be poor on health long-term and one of the first things I had to accept is that I would always be on something, just didn't appreciate how much. Apart from contraindications there is also evidence that the body becomes used to some medications and they become less helpful. This is especially the case with opiates and I constantly get thrown at me that my condition isn't getting worse I am simply getting used to the opiates. Perhaps they would like to see the accelerating damage shown on the MRI's.... oh wait, they can't be bothered to find out how to do that.

    I have finally seen a doctor (though he couldn't wait to leave) and have agreed to trying Gebapentin again. Despite having problems before there is always the possibility of drug interaction causing the previous issues and, in light of having problems with Pregabalin, I have to try something because I cannot go on as I am. I do believe that I got the point across regarding the degeneration and it's acceleration and I asked for a DNR form and he agreed to send one, fingers crossed. If I am already beyond what is deemed safe to use then a lack of increase are only going to make things worse, hence the form. I did explain to him that I had actively tried to suicide (without medication) last Friday but the sheer pain kept me from completing such a course. I expected more of a reaction from him but he didn't seem bothered.

    I have finally heard from OT and have a form to fill in, no idea yet how I accomplish that or how I post it once complete. Obviously the surgery did not state my situation in anything close to actual. Yet more pathetic support from the surgery, I guess.

    TK
    I am here to kick ass and chew bubblegum... and I am all out of bubblegum -- They Live 80 something cult film.
  • debbiedo49debbiedo49 Posts: 2,493Member Brian Blessed
    Good luck either meds @Topkitten I’m on Gabapentin and I have some side effects. But it helps . Anyway I just went through a really bad flare up due to stress and I just cried and crashed. I wished that I had a pill to knock me out. I pushed myself too far and I regret it.


    I am a fibrowarrior!
  • TopkittenTopkitten Posts: 894Member Chatterbox
    @debbiedo49, it has taken me years to learn to never push myself even though now that doesn't take much. The unfortunate side-effect though is that now I rarely, if ever, try to do anything new or even much of what I have done, Flare-ups are virtually a thing of the past but the effect on my MH is severe as I was always a person to push new limits and now I rarely even reach them.

    Good luck.

    TK
    I am here to kick ass and chew bubblegum... and I am all out of bubblegum -- They Live 80 something cult film.
  • ricky1040ricky1040 Posts: 72Member Talkative
    I cant live like that tom. When fibro is really bad i am demented. Im very social and really rely on contact and relationships. So when i get a really bad spell i feel real isolated and like im missing out. Look thing is i know life could be much worse and i am happy most of time even with pain but if im only going to live this life once i want more. 
  • ricky1040ricky1040 Posts: 72Member Talkative
    I had counselling about this. I need to just refocus on that and make the best of what i got. I hope u all are able to make best of things. Never give up
  • ricky1040ricky1040 Posts: 72Member Talkative
    Also debbie. I cant say i agree with tom about not trying and pushing yourself. I guess its about moderation. Its hard tho as the goalposts seem to constantly move. 
  • debbiedo49debbiedo49 Posts: 2,493Member Brian Blessed
    @ricky1040 yes it’s about moderation. In my case I tend to say yes first then think later like I used to but now i have to stick to, let me think about it first then decide. Tiny steps work best for me or achievable goals


    I am a fibrowarrior!
  • ricky1040ricky1040 Posts: 72Member Talkative
    Sorry refelecting on what i said i dont mean any harm tom. Not critizising you. Just case it is taken wrong
  • DavidJohn1984DavidJohn1984 Posts: 99Member Talkative
    Hi all, it’s so crazy reading other people’s stories. Has nobody else experienced Fibromyalgia that is unresponsive to pain killers? I have just started Pregabalin and on Amatryptaline, however I have to go up by 50mg per week on Pregabalin on 10mg per week on Amatryptaline. The only thing the Pregabalin has seemed to help so far is with the alladonia, having a shower to be was like being blasted with hail stones, however it has now changed to feeling like i’m being scolded with hot water. 

    Can anybody advise on CBD I tried the oil but I can’t stand the taste. I’ve never smoked anything so vaping for me is a touchy subject. Is it just pure CBD oil you vape or other chemicals too?

    also has anybody else experienced other conditions due to their Fibromyalgia?

    have a great day and thank you

    David
  • CockneyRebelCockneyRebel Posts: 4,298Member, Community champion Brian Blessed
    Hi David

    CBD oil does not help everyone but it is available in capsule form. Vape liquid is a mixture of flavour/ CBD and either vegetable glycerine or Propylene Glycol not all contain nicotine

    Be all you can be, make  every day count. Namaste
  • DavidJohn1984DavidJohn1984 Posts: 99Member Talkative
    Hi @CockneyRebel I will have to further look into it. I did see the CBD oil from Charlottes web, however atm I am only getting £20 a month on universal credit. So will have to further research it.

    does vaping give you a faster relief?

    thank you again

    David
  • CockneyRebelCockneyRebel Posts: 4,298Member, Community champion Brian Blessed
    Typically There is less CBD in e liquid than in other forms, and it still tastes disgusting.
    Be all you can be, make  every day count. Namaste
  • DavidJohn1984DavidJohn1984 Posts: 99Member Talkative
    @CockneyRebel ahh okayyeh that is one thing I can’t stand the taste or the smell. I know Charlotte’s web has extra strength capsules so I shall wait and try them.

    thanks again
  • maudmaud Posts: 10Member Whisperer
    Charlotte’s web is v expensive.
    Simply CBD, UK based, is very good and cheap. You can ask for advice on their FB group or CBD users UK FB. Both v helpful and friendly. Oil is available from £6 for 10ml.
    It isn’t like other Meds and taking too strong a dose too soon can make things worse. I would recommend getting advice for your condition. Capsules or gummies (sweets) are also available.
  • DavidJohn1984DavidJohn1984 Posts: 99Member Talkative
    Hi @maud it was the capsules I was looking Into, i’m not a fan of the taste of CBD oil. I was going to speak to my Dr about it too. I can’t join the FB groups as I don’t use any form of social media. I’ll take a look at simply CBD UK thank you 😊 David
  • debbiedo49debbiedo49 Posts: 2,493Member Brian Blessed
    I’m taking hemp oil capsules which seem to help but not sure why. 
    Just trying out revitive foot massager which was my dad’s as i have plantar fasciitis which is affecting my wellbeing so I will try anything!  Waiting on a Podiatry appointment with bated breath.


    I am a fibrowarrior!
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