Recently been to the pain clinic and told I have this, it's not a diagnosis as it's not a disease as such but more a description of symptoms. They don't know what causes it or how to treat it (although some random drugs help some people there is no specific treatment). It's taken nearly a decade to get this far but now going to pain seminars where you get to see a clinical nurse, physio, psychologist etc in one clinic.
Basically it means (to save anyone googling it) that you suffer in pretty much constant pain in various places or just throughout the body. It's hard to describe but imagine the nasty aches and pains that you get with flu and then imagine feeling that way 24/7 sometimes a bit better, sometimes a lot worse. As it's not classic pain - ie pain from damage traditional painkillers have little effect I have 500mg/30mg co-codamol and Dihydrocodeine at the moment sometimes they help other times they dont.
FM is kind of a subset of ME or Chronic Fatigue Syndrome they're all lumped together, depending on what is the worst symptom is the title you get given lol.
Way the pain was explained to me: Imagine you're at a party with lots of people talking, one person is talking to you and you without thinking tune out all the background noise and just listen to their voice. Now imagine that normal pain is the conversation you're having and all the background noise is not pain but other signals flying around your body. What is happening is your brain/CNS is processing all that background noise as if it was the thing it should be listening to so what should just be background signal is felt as bad pain.
Drs have no idea what causes it and how to treat it at the moment unfortunately.
I've had many of the other drugs they use to treat it there are 2 epilepsy drugs that have a side effect of lessening the pain Pregabalin worked for a few months on me then stopped and Gabapentin made me errr shall we say a bit loopy.
So I have this flu like pain in my legs, knees and ankles, arms and some days operating a mouse is a real chore.
It's hard but sadly seems to be just have to crack on and deal with it by treating all the other problems it causes like depression. I think if it wasn't for the kids i'd have given up and retreated under the duvet never to be seen again lol.
Still there are people worse off in the world and you just have to play the hand you're dealt eh
A friend of mine has FM and CFS. He had to quit work in the end as no matter how much he tried, he couldn't cope with the pain when working (I felt bad for him as I could visibly see swellings on his joints and such like, just didn't look good). Nowadays (after 8 years since the diagnosis) he rarely makes it out of bed before 11am because of how tired he is, and when he is up, he can't really do much. He tried to do shopping the other week, got home after the trip and went to bed and didn't wake up until the next morning, and when he did, he was in agony. He went on DLA and they told him he was faking it at the ATOS interview because he simply was able to show up, and this was despite having an MRI confirming the pain receptors in his head firing constantly and 2 specialists (1 from a bupa hospital and the other from an NHS hospital) confirming he had it.
He is in a bad situation and it will only get worse.
one of our PE teachers has a pretty mild FM and so does our helpdesk lady - they are managed by prescription pain killers and ibuprofen gel, as well as prescription anti inflammatories. Our helpdesk lady also has various concoctions to help her sleep as she is unable to get comfortable. Another of my friends has pretty bad CFS and is an 'expert patient' as well as being a healthcare professional. Elizabeth Hodge - Occupational Therapist :: Home is her website and she welcomes contact from CFS or FM sufferers, just to chat it over.
Sadly, a long term friend of ours suffers from this. He has had it since he was about 20 and he turned 50 last year. He has found it pretty debilitating and it has definitely got worse as he got older.
I am sorry, to hear that you suffer from this and hope that pain management works for you.
Time to report back to gp today. Feel terrible this morning have ups and downs think I'm on a downward one at the moment knees, wrists & fingers particularly bad today along with lower back absolute agony. I do find that pushing thru getting up going to work helps, whether that's because it's a distraction or whether it's a case of loosening up during the day I don't know.
Going to see if I can try some of the esoteric drugs today. There's an addiction treatment drug used to treat fms in incredibly low doses some patients have found it very helpful, treatment is referred to as LDN so see what gp says to that today.
Last edited by Bananas; 30th April 2014 at 07:20 AM.
I'm a fellow sufferer @Bananas - did a lot of research when it first hit me in the early 1990s. Found a consultation with a Kenesiologist extremely useful; all seemed a bit strange but in essence relates illnesses to diet.
There is a heap of anecdotal and factual info on the net pointing toward various additives. In particular the much less widely used, nowadays, synthetic sweetener E951 (aka Aspartame) which was first, it seems questionably approved in the early 1980s. Dr Betty Martini in Atlanta is a world authority on the stuff and in the UK Prof Erick Millstone at Sussex Uni is the lead.
Worth looking at your diet and cutting out anything synthetic if nothing else.
My 37 year old son when a teenager used to go hyper on just ordinary cola and my now 19 year old daughter had a mystery rash when she was two and a half which vanished when we cut additive laden fruit squash out of her diet.
Yeah its a fair point that about diet too. We can trace back exactly what triggered mine off which was near fatal Glandular Fever when I was admitted to hospital I was 24 hours from liver failure (yet I wasn't ill enough for a dr to come see me on a saturday "im not coming out to see someone in their 20s with a stiff neck" had to get taxi to clinic then fell thru door lol). It's interesting to see how widespread this is now, when FMS/ME/CFS/PVFS was first bandied around me there was very little out there but now the Pain Clinic i'm going to is talking about setting up a support group for FMS sufferers as there's so many of us (don't know whether that's good or not).
Good result at Drs today (I guess) she's always really helpful and often asks me what I would like to be prescribed as she knows i'm looking into it more than her and then we discuss the feasibility of the treatment. She's taken me of the dihydrocodeine as it was fairly ineffective and as there's no paracetamol in it its incredibly tempting to take more than prescription to help (within safe limits of course) given me 300 top whack co-codamol to help. The Venlafaxine has been upped to the top dose now 2 tablets morning and evening which helps with the mood swings and also mediates the pain a little and I have small doses of Amitriptyline twice daily.
All of that lot together helps me limp through life and it's a huge difference on having nothing. We're looking into low dose Naltrexone next as a therapy.
Dr Myhill does a lot of interesting research into this and offers private tests that have been developed and not adopted by the NHS (Mitochondrial function test that can give a number of your energy levels etc) she also sells supplements at a very reasonable cost for those that want to try them. There's a Myhills Mineral Mix (sounds like dog food) that has everything you need in it plus huge doses of Vitamin D and other things that are allegedly involved in the pain and tiredness half a kilo of the mix is about £20 and it lasts for around 100 days. I've not tried it yet but going to order some to try nothing to lose eh?
My Wife is a bowen therapist and has had a number of people with FM come to her. It's really helped them apparently. Obviously, because patient confidentiality I don't know all the details, but I know that it can relieve some of the pain and aches. May be worth you looking into. One of them I know as a friend, and she can't stop raving about the difference it has made to her. This is my wife's website, which may be a starting point and some information for you... bowen by danielle : an effective, non-invasive and gentle therapy. I've had it myself a number of times and find it helpful, it's really gentle therapy but you can tell the difference afterward.
@banana here is en eduhug for you. Am pleased you are doing all your own research knowledge is power right? I too am researching (effects of breast cancer treatments) it does help. Hang in there and take good care of yourself.
I do hope you get a handle on it soon. My sister has ME and even after many years, stress will instantly render her with every joint screaming and a "concrety" feeling in her arms and hands. She tells me that at its worst, she couldn't even lift her hands to open up her laptop. Rest doesn't help because she isn't really tired, just in pain and "frozen".
Hers has improved by itself - very very slowly but she has ended up several stone heavier because she just can't move like she used to - she was an aerobics teacher - and it is hard to resist the doughnuts when you feel so miserable. She finds swimming or aqua aerobics quite beneficial - I don't know if you have tried that?