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pain from Fibro

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  • sarah50
    sarah50 Community member Posts: 119 Pioneering
    @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
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    @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 
  • missmuddled
    missmuddled Community member Posts: 6 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.???
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    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'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • missmuddled
    missmuddled Community member Posts: 6 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.  
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    I literally cannot feel my finger scrolling here ? 
  • ricky1040
    ricky1040 Community member Posts: 121 Pioneering
    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. ?
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    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'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    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.
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    @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'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • ricky1040
    ricky1040 Community member Posts: 121 Pioneering
    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. 
  • ricky1040
    ricky1040 Community member Posts: 121 Pioneering
    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
  • ricky1040
    ricky1040 Community member Posts: 121 Pioneering
    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. 
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    @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
  • ricky1040
    ricky1040 Community member Posts: 121 Pioneering
    Sorry refelecting on what i said i dont mean any harm tom. Not critizising you. Just case it is taken wrong
  • DavidJohn1984
    DavidJohn1984 Community member Posts: 99 Courageous
    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
  • CockneyRebel
    CockneyRebel Community member Posts: 5,209 Disability Gamechanger
    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
  • DavidJohn1984
    DavidJohn1984 Community member Posts: 99 Courageous
    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
  • CockneyRebel
    CockneyRebel Community member Posts: 5,209 Disability Gamechanger
    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

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