Fibromyalgia 22 years.Drug intollerant 20 years..Consultant removed me from his list 15 years ago ...saying they could do nothing for me as j could not take drugs.....My life since....Pain pain pain
More disability signs in whole body..
Scared ,alone, almost isolated before lockdown. Now full lockdown.
Gp unreachable.....My husband really tries to help me but gets sad ,angry,upset.....
Started with hamstring pain left leg just above knee joint at the rear.....very very painful...ankle joint same leg is fusing also very painfull.......I need to talk to some on who knows for reassurances...
Who.......
I use hot and cold....rest....hubby massages with arnica and peppermint
I try to meditate but pain overcomes this.
I take CBD capsules ...will not take any with hylosagenic properties.
Fibromyalgia and RA are in full blown flare ups....my head itches...I am tired.
Every day is a fight...nights are war zones....my body and mind is tortured constantly.
I have tried and used most all alternative medicines and treatments.
What i need is a professional to say
Ok you have this pain it is caused by ....
And occurs......then i can file the pain in my brain and i wont make it more than it is by stressing what it could be....
Rear leg pain could be DVT.....they say see your doc for any new rear leg pain....
Thats my status.....no one there.
Written by
Mrspainting48
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Morning, I am so sorry to read of your horrid struggle day to day , yes it is very upsetting for your husband too as they feel sad because they want life to be better for you. Have you spoke to your surgery in the last few days regarding DVT, I know at the moment most surgeries are putting people through to a triage nurse to discuss anything , you differently some medical help /advice , if your doc is unattainable they really should book you in with another, I hope you get some help very soon,as it’s the weekend could your husband speak to the 111 service, just ready our post and wanted to reach out xx
I have spent hours on the phone ringing the doctors surgery its so busy cant get through....we can not call in personally we have to ring....bfore the virus getting appointments was a three week plus nightmare.....
I am a retired theatre nurse and gave my working life to the NHS ..now i need help I find its not there......
I have on one occasion rang 111....and it was a disaster ....
I was all my life a big champion for the NHS....even after retiring i worked voluntarily running an Arthritis group.
My life role has been to care.......the NHS and meself both born in 1948.....
I just feel lost.....the support i gave i cant seem to get ....though they gave me a pain relief course this year run indirectly through Prince Charles......the first and only course offered to me in 22 years...
I had asked for any help all that time..
Its seems to me RA and Fibromyalgia are overlooked and ignored mainly due to lack of understanding .Its as if its normal life effect like oesteo which comes through wear and tear.....mine is not hereditary but viral....
Joining this group has shown me there are thousands like me....who after taking the very toxic drugs can no longer tolerate any chemical drugs...
Can I praise you for giving those years to the NHS, the dedication I see from family friends who work now for the NHS, you sound a wonderful lady who also gave voluntary time to help after retirement that says it all for me. Yes the dreaded phone line I keep re dialling to be told full whilst on hold, both of you take care x
Hi
I'm so sorry you are in so much pain. I have pain 24/7 due to many conditions. It's awful isn't it? I do hope your hubby is supportive. Take care and stay safe. Love and hugs Lynne xxxx 😘
I agree with you on the private front - that’s how I got diagnosed and also some of my pain sorted. The NHS is great, but sometimes there’s too much pressure for them to be able to do everything. I saw Dr Chris Jenner at The London Pain Clinic if anyone is interested in that route.
So sorry to hear this. I would recommend giving 111 another try as at the moment they are booking “hub GP” appointments at Minor Injuries - or near me they are. You can call and ask for one of these “hub” appointments and maybe even be seen today.
Oh my goodness, I am so sorry to hear your predicament, unfortunately there is no fix never mind a quick fix.
I am 48, I have had Fm for longer than I have been diagnosed I recon, only diagnosed end of 2018 but suffering from Hyper-mobility Syndrome for ever, diagnosed 2003 after battling with GPs for 12 years to get an answer to my pain(thinking it was psychosomatic). I totally feel you and the frustration you are going through.
I know there are advantages to putting a name to what ever ails you and to be able to do the right things for whatever reason, but the truth of the matter is, you are suffering and you need to learn how to deal with that. Very recently I completed a "Pain Management Programme" and although it hasn't got rid of my pain it has changed my thinking towards it; I feel anyone and everyone would benefit from doing such a course. I am aware that it would be some time before you would be able to attend such a course but the sooner you get your name in for these things the better, worth asking for a referral.
In the knowledge that I was going to be attending this course, I really thought to myself, what exactly do I want to get out of this; that's when I came to the conclusion(stated above) that "I'm in pain and I've been diagnosed, what condition is causing what, what can I do to stop it?" but then I already know there is no cure for either of my chronic pain causing conditions, "there is no cure, therefore I need to learn how to live with what's going on with me"; believe me I was so sceptical when i started the course, but what they were informing us of made so much sense. Nowadays I pace(extremely difficult) doing what needs done, i am as mindful as possible, I do something I really enjoy everyday(even if that's simply colouring in, when something physical is out of the question)and I do simple movement exercises daily. It is also extremely important to not let the negative thoughts take you over.
There are so many symptoms/sensations with Fibromyalgia, a lot of which I feel on a daily basis, in fact this past few days have been extremely testing, pain, itching, stiffness, aching, fogginess, constant headache, sensitivity to light, pins n needles, shoulders and neck extremely tense. So I am afraid to say, what you are going through and feeling is normal, If you are worried about the pain in the rear of your leg(fear of DVT) then speak to your doctor or nurse, always put your mind at ease when you have a health worry, don't put it off; this only adds undue stress. As I always say, "there is no such thing as a stupid question".
I am aware that the daily additional stresses at this moment in time is having a detrimental affect on me, although I am trying to stay as stress free as poss.; it is impossible. Like you I am finding it difficult to meditate or even use guided meditation, there are just too many pain/sensation distractions. I've not done a "body scan" in some time perhaps it might be beneficial when in flare up(not been in such a flare up since learning these techniques).
I am sorry that I am not a professional who can totally reassure you, please know you are not alone, we know the struggle is real; I hope you feel some relief sooner rather than later.
As i said i attended a pain management course the first and only course i had ever been offered......
Not because i never asked ......i asked every hospital visit.....i asked every doctors visit...and was always told the same....no funds....i asked for physio ...
I asked for any alternative help.....
The course i went on, helped and I met some wonderful people...
I have always looked on my RA and Oesteo as an inconvenience rather than an illness and when Fibromyalgia was diagnosed 20+years ago i refused to accept the word depression.
Having had a very bad episode with depression years previously.....I was not going to allow in to my life again.
So i use the words good and not good for my days....The not good can be made good....but the word depression drags you down just saying it and wraps you in a false comfort blanket...This is my way of handling my life.
I am sure we all have our own ways.
The important thing is ..If It works for you great.
Hi there, it's nice to meet you I'm sorry to hear your suffering so badly right now. I know many members my self included know exactly what your dealing with.
Unfortunately while our wonderful NHS is stretched to the limits dealing with this horrible pandemic and so many poor souls dying by the day I'm guessing they have to prioritise between those suffering from a life threatening illness and those that don't.
You been an ex NHS worker I'm sure you know that. I do understand your pain. I'm a wheelchair user with a lot of severe pain issues and can not take pain medication so I completely empathise with you.
Do you think the lock down and the fear of the virus problem may be causing your pain to flair up? I have to be honest and can not see much help available for none urgent or none terminal cases till the pandemic is under control.
Please try come and have a chat here with others suffering like yourself. It really does help to know your not alone in your suffering at this time. Take care and please stay safe 🤗🤗
Sorry to read this. It’s so frustrating trying to get help . I took my self off the drugs as I found out a year ago that I have liver damage which, I feel sure was caused by drugs over the years. (I don’t drink, well , hardly ever) . That’s all the doctors seem to want to do ( give various painkillers and anti depressant/ seizure drugs). Most recently , when I asked for some kind of specialist help (I’ve never received any in 12/13 years since Fibro diagnosis)my doctor wanted to put me on pregaballin (one that I’ve never had before) . So, I then decided I have to try and do the best for myself as I can’t keep taking drugs which would probably continue to damage my liver.
I see MyDexter mentioned Magnesium. I have always found Epsom salts In a warm bath give some,temporary help . But, recently (about five or six weeks ago) after some research I decided to try a magnesium supplement. There are a few but I plumped for Magnesium malate powder as it would seem that the uptake for most people is better than other forms. I have to say that although not the miracle cure we all hope for, it has most definitely helped with my sleep and , also with excercise. I was determined not tot give up swimming and walking but was finding it increasingly difficult. I have found since using this that I’ve been able to tolerate excercise again.i have even been out on my bike the last couple evenings when very quiet (along our country lanes) a thing I’d hardly done in over a year. My stiffness , burning legs , burning head etc are all still there but I feel that posssibly some of the pain and swelling on my left side(wrist, knee, ankle, hamstring) has been less troublesome.
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I'm sorry to hear your suffering so badly right now. I know many members my self included know exactly what your dealing with. 
Never done a blog before but I'll give it a go!
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