Looking for Fibro/ME sufferers any others?

[Starchild]

MY name is Starchild and I have fibromyalgia.
I have not had a flare up for nearly 12 months and am about to lose my DLA because of it (meh)!
Gardening is my release and exercise, but boy do I regret it afterwards.
Non-sufferers do not understand why we use disabled parking spaces and blue badges nor do they understand that you can't always make plans in advance. (Worst for that is actually hospitals when you need to cancel appointments!! )
They are not psychosamatic/psychologiacal illnesses, that means it is not "all in the head".
So that is it.
Any other suffers or sufferers who suspect they have the condition but doctors seem to ignore you or tell you to "get a life"?

[shirlthegirl43]

Hi Starchild. I have ME/CFS and some days I can't lift a potato never mind the saucepan to cook it in. I got turned down for DLA and haven't managed to summon the strength of will to appeal. I wake up full of good plans and intentions for the day and go to bed cheesed off if I haven't achieved anything worthwhile. I know that there are days where I can't do things (and retaining instructions is hard sometimes) and I have days where I can't even keep track of a sentence from start to end. The biggest problem is the frustration, the pain can be bad but is bearable.

[Starchild]

Do you find that doctors are always telling you to "pace yourself"?
Which is amusing since I have 4 kids under 10 and the idea of them knowing about pacing myself is hilarious, especially as one is ?ADHD/?aspergers.
My current GP is one of those who does not believe it exists. He also happens to be practise manager and living rurally, the only surgery for 10 miles. Besides that we are not in a catchment area for any other surgery.
He refused to sign my Shotgun license because I am on amitryptylene(sp), which, yes is an anti-depressant, but it's not for depression, it's for muscle spasms and to help sleep. Event he PC dealing with he license knows about it (his wife has Fibro), but due to this GP, I cannot get a license. As the PC says...when you are at youre lowest, you can't even lift a shotgun, let alone kill yourself. (Besides it's near impossible to shoot yourself with a shotgun and rather messy, I have enough drugs in the house to kill an elephant, why would I shoot myself?)
The DLA is a nightmare. I have had it on and off for 6 years. Every year or so a new claim, another humiliating medical examination by a retired GP who doesn't have a clue.
Just had to apply for it for my hubby to as he has been left wheelchair bound by a mystery virus, gets tired easily, hurts all over (sound familiar?) and has confused the Drs! He has a neurology appt. next month, he's been waiting for it for 2 months!


oh good grief, I am in a self-pitying mood today!

[shirlthegirl43]

I am fortunate to have a young and up-to-date doctor. He tested me for everything and depression and after about the third lot of tests he said, 'well, since it isn't anything else and you are not depressed, it must be CFS' not a lot of help in that all he can prescribe is painkillers for when it gets too bad. I do pace myself, the boys are old enough to understand and do some stuff themselves (17 and 12) and OH (Madmax) gave up contracting abroad to help me. The biggest challenge is doing things I don't enjoy anyway, like ironing, other chores get tackled when I am able and that is that.

Actually, the GP who came to see me for my DLA turned out to be my old GP from years ago so that was sort of OK, the problem is the questions which are designed to trip you up and when you have ME and a 'bad brain' day it is easy to trip over your name!!

Hope everything takes an upward swing for you, I find the warm weather and the sunshine helps make the world look better. I also focus on good things and ignore negatives.

[Catrina]

Hi there I was told I had Fybromyalgia last September by a doctor who I had been going to for 12months with these pains in my arms and legs and extreme tiredness. I was also having a pin in my left knee which kept me awake at night. I found it went in waves. Some nights I would wake up at 2am and know that there was no way I was going to sleep. Eventually she said that it was probably Fybromyalgia in the absence of anything else, and wanted me to start taking low dosages of antidepressants to help me sleep.

I would not take them and started to try and sort myself out. Some days I could barely get up stairs. In January I started Pilates and the teacher recommended having The Bowen treatment. I had six sessions and I have never looked back. I am not saying I am without pain but almost all the time I am without pain and it gave me such energy that there are very few days when I am tood tired to do anything. I also started to sleep better and if I do have a bad day it is usually because I have done too much and ignored the tired signs.

[piskieinboots]

blimey - sounds horrid for all of you

I know I am lucky in that I have a huge amount of energy (altho not always obviously) - I'd gladly share it out if I could.

I have a pal (used to be a RAF copper) that has ME, he is making slow improvements - so fingers crossed, for you all, that advancement in medicine and the understanding of such will bring some relief.

[Catrina]

Sorry for my ignorance but what is CFS

[everdream78]

Sorry for my ignorance but what is CFS

Chronic Fatigue Syndrome or lol

I've had fibro (diagnosed) for nearly 6 years now but it's been going on a lot longer, probably since childhood. I'm also hypermobile in my knees, hips and ankles (I spontaneously dislocate basically, not a party trick I'm keen on really lol)

My FMS comes in cycles but the pain is constant - the only way I've been able to describe it is like the ache you get with influenza but without the cold!

I know my limits but even so i refuse to let it stop me doing anything. I've tried every type of medication - low dose anti-depressants (amytriptaline), arthritis drugs (Naproxen, dicolfenac) and even epilepsy drugs, nothing worked for me. But then I thought to myself, "these drugs are synthetic and aren't supposed to be in my body" so I tried "alternative" therapies - I put alternative in inverted commas as to me, they're completely normal lol

Homeopathy worked for me - arnica first as FMS usually onsets within a year of a traumatic event such as scarlet fever, car accident etc. Arnica brings out the internal bruising that your body is storing. Then it's a case of finding the rest of the homeopathic treatment that works for you as an individual.

Then I basically got p1ssed off with being a "victim" and decided to fight back - I was only 23 at the time and in a wheelchair for 6 months - hell no! I find having a positive mindset, even when you're feeling like you're recovering from an autopsy helps no end!

Be strong, be brave - remember you are not the only person that feels the way you do, you are not alone and we are always here should you need to rant!

[piskieinboots]

good on ya everdream - I guess that attitude stands for most things for most of us, most of the time ...and yes, here is a good place to rant

[Catrina]

I agree you do need a positive attitude and it does help you through. I have gone from a very fit and energetic 52 year old to a not so fit 54 year old and all because the doctor did not diagnose me soon enough. She just said that because I do cleaning for a couple of people twice a week and have an allotment and a house and garden to look after she thought the cleaning was having a toll on my body. I was someone who regularly walked up Pendle Hill at least once a week, went for long walks or mountain bike rides at the weekend to almost being unable to get upstairs. And when I was cleaning at the worst of my illness I could barely carry the vaccum upstairs. What I complain about is the doctors attitude to Fybro. She just told me it was my job and to cut back.

At the moment my worst problem is my feet because they are so painful. My big toe and second toe joints are painful constantly and some days I can hardly walk on them. She says its arthritis in the big toe joint and called it Metatarsalgia. But no suggestion as to what I can do and neither when she told me that I had Fybro did she suggest what I had to do. Found all the information on the net.

If you do get chance to try The Bowen Technique please do try it because it does relieve the symptoms of Fibro.

Right I am off the the lottie to plant some plants.

[janeyo]

I was diagnosed with CFS a few months before falling pregnant with my second child. I am thankful that since having a dreadful pregnancy (had SPD too) it has not returned.

I did find many people seem to think it is a makey-uppy illness - even my own family!

I am hopeful I am in remission for a good while - going well as baby is almost a year. We have totally changed our lifestyle since I was first diagnosed - and I am starting to think it is helping.

janeyo

[Starchild]

I first fell ill in 1995, I was diagnosed in 2005. 10 years waiting for a diagnosis. I had severe growing pains from the age of 8 and have had knee and ankle problems since I was 9/10.

Unfortunastely FMS has been found to be hereditary, my eldest is 10 and starting to complain of achy joints. The Dr has put them down to growing pains but recent research in the US has shown a definate link between severe growing pains and FMS.

[shirlthegirl43]

I first fell ill in 1995, I was diagnosed in 2005. 10 years waiting for a diagnosis. I had severe growing pains from the age of 8 and have had knee and ankle problems since I was 9/10.

Unfortunastely FMS has been found to be hereditary, my eldest is 10 and starting to complain of achy joints. The Dr has put them down to growing pains but recent research in the US has shown a definate link between severe growing pains and FMS.

That is interesting. I remember my mother complaining of arm pains in much the same place as I first started to feel them. I also had bad pain in my joints in late teens and early twenties but put most of that down to the dance and horse riding injuries I had sustained over the years. Might raise the fibromyalgia issue with the Dr next time I go to see him.

[Starchild]

My late fathers aches and pains were put down to "non visible arthritis/rhuematism caused my malarial infection" years ago. Saying that, they told him he just had severe migraines before they discovered his brain tumour!

[Catrina]

How strange I had malaria in 1978 when I stayed with my sister in Zambia for 6 weeks and did not continue taking my anti malaria tablets. I came down with malaria several times before it was properly treated. I know the pain of malaria and maybe that has caused my FMS. I dont know