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pain from Fibro

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  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    @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.
  • Peridot
    Peridot Community member Posts: 9 Connected
    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 
  • maud
    maud Community member Posts: 10 Connected
    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.
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    What is elbow grease balm please?
  • Peridot
    Peridot Community member Posts: 9 Connected
    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 
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    Would you say that vaping is a healthy thing to do?
  • Peridot
    Peridot Community member Posts: 9 Connected
    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:
  • ricky1040
    ricky1040 Community member Posts: 121 Pioneering
    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. 
  • sarah50
    sarah50 Community member Posts: 119 Pioneering
    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?
  • ricky1040
    ricky1040 Community member Posts: 121 Pioneering
    makes me sick when i hear genuine people are being treated like this. can i ask what vitamins u take?
  • sarah50
    sarah50 Community member Posts: 119 Pioneering
    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?
  • ricky1040
    ricky1040 Community member Posts: 121 Pioneering
    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
  • sarah50
    sarah50 Community member Posts: 119 Pioneering
    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
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    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.
  • sarah50
    sarah50 Community member Posts: 119 Pioneering
    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.
  • ricky1040
    ricky1040 Community member Posts: 121 Pioneering
    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. 
  • sarah50
    sarah50 Community member Posts: 119 Pioneering
    @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.
  • angel137
    angel137 Community member Posts: 51 Courageous
    @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 
  • sarah50
    sarah50 Community member Posts: 119 Pioneering
    @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.
  • Peridot
    Peridot Community member Posts: 9 Connected
    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

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