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pain from Fibro
livonia
Posts: 74Member Courageous
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
I would suggest you stop trying to prove to them you are ill and simply move on to managing the issues. One way forward is to get your GP to refer you to the Pain Clinic as they will provide you with ways to continue to manage your problems. If those around you are true friends they will rally round and support you, if not then you are better off without them. Learn coping mechanisms and ways to do things that are difficult without letting them stop you dead. It's a long road but many go along it and find ways to cope but what works for one will not always work for you so remember to listen and to try but to be prepared to adapt others ideas to things more relevant to yourself.
TK
Online Community Officer
I describe my pain as todays daily torture and just mention the worst pain I have.
i also tell people to compare my fatigue to a phone if you use it too much too quick it loses emergy snd takes ages to rechcharge.
so I say things like i have only got 10% charge at the moment youll have to wait til I recharge.
There will always one who says "cant you walk any faster"
Iv starting reminding them they may get fibro themselves
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...
While it's very sad to hear, it's also kind of comforting to hear that I'm not the only one to lose my friends to this illness. And even though what little family I have have been fantastic, I still feel like they still don't 100% understand what life is like for me.
When it comes to explaining my illness to those around me, I tend to use the Spoon Theory to explain my fatigue, and the extra energy sapped by doing things in pain. Best (quick) way I've found so far to explain to those lucky enough to not know what chronic illness is like. I have also recently found this letter for people who ask you about fibromyalgia. Maybe these will help you explain to friends? Maybe help them understand a little better?
It was recommended that I use this site to connect with other people in my situation, who I can talk about my illnesses to and will know exactly what I mean.
Also looking for tips about how to manage my pain. With this cooler weather and other stress in my life, my pain levels have spiked this last week like I have never experienced before! I love @debbiedo49 's idea of heated blankets! No idea why I've never thought of that before. Anyone else have any other methods that work for them on those super bad days?
Hoping you are all having good days wherever you are
Ive got Fibro, friends have went since the illness started but screw em
I really focus on my pets, my partner and interests. Its really important to find an interest. It makes up for the lack of social thingys.
Most of my friends Ive made are online. That keeps mw going.
CBD is amazing, if you can get it in its natrual form thats all the better
Lavender and magensium spray works on my neuropathic pain in my feet. Theres some pain management resources online. The pacing stuff is good ( though Ive found the pain management sessions on the NHS rather useless).
Fibromyalgia sucks badly, its taken away so much life for me. And Ive kinda gone through a grieving process about the whole thing, about the life I couldve had. Now I focus on the good stuff in my life only 💜
I hope everyones ok and having a pain free day
I am in the same situation as you , It is awful. Dealing with the pain is bad enough without the panic attacks and anxiety and depression. I have lost all of my friends and family and it is all very isolating . We need groups and forums definitely . Love and peace to all .
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.
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
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!
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.
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
Gentle hugs to all!
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.
Sounds like you've got an awful lot on your plate at the moment! What a terrible time for a flare up
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
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
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
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
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.
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
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
Kinda nice to vent to someone who understands though, so thanks for listening haha
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 🙂
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.
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.
Enjoy the weekend.
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.
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!
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
Hope everyone is having a pain free (or minimal at least) day! x
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
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
Good luck.
TK
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
does vaping give you a faster relief?
thank you again
David
thanks again
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.
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.
The reason? Hope. Life may be s*** but there is now hope.😁
i take so many tablets that I rattle.
i have had to start using a walker and wheelchair, my son is my full time carer.
i feel guilty all the time as I do not do enough.
family and friends have diminished.
It isn’t all in my head it’s all in my body.
i can do 10 minutes of something and resting for an hour.
When will this end.
Scope