Fibromyalgia

crutches

Thanks for all these posts.I've been really suffering for the past few weeks,doubled all my meds but still up at 3 most nights to get more painkillers.I take Tramadol,co-codamol,Robaxin,Voltarol,dulcolax , eve primrose+glucosamine.

Overstretched myself at school open eve 3 weeks ago and still suffering.Just got given my blue badge though so very happy with that.Makes so much difference now youngest is in school and no longer using parent and child spaces.Get LRC DLA but no mobility.might reclaim in a few months though.Got Inc.Ben medical coming up too.

Thanks to this site I have applied for disabled railcard and cinema card.I do most of our shopping online with offers too.

Elmostreet

ooh and the bruising tell me about it! these mysterious bruises just appear mostly on my legs but I found one on my left hand the other day. They just appear!

Careful_with_that_Axe

somebody_else wrote: »

I've been happily single since 1999, and to be honest I'm not interested in having an OH, so the total loss of libido isn't currently an issue for me. To be honest, I have enough trouble looking after myself without having another person in the house that I'd have to take into consideration all the time. I suspect that I'm not the ideal person to be 'discussing' this with, 'cos I don't have an OH, so it's not really an issue for me.

I'm in a similar situation and feel the same as you, that I don't have enough energy or brain space for another person in my life. I was curious whether this was another symptom of AI probs, or meds, or just me! :rolleyes:

and, yup, that "joke" does sum things up neatly

bigzippy

raeh wrote: »

does any one else bruise? sometimes when iv laid with maybe my knees touching for ages in bed i will get a bruise where they touched together, and i only have to knock myself slightly and i get bruises, as someone esle said a while back though whenever i see the gp about anything they just put it down to the fms

I never used to bruise - at all. If I got a bruise you knew I'd been hit by a truck or something...these days bruises are popping up everywhere. I asked my GP about it and he said I was just a big girl! Apparently "girls" in their 20s go through a feeble bruising stage. I don't buy it personally.

The other thing though - on the subject (sort of :rolleyes:) - if any of the you have the trapped nerve type pain do you ever get (for want of a better way to expain it) a stretch mark that looks blue? perhaps under the arms or along the rib cage?

Also, in the last few months I've had some "inflammatory stretch marks" pop up - which were itchy originally but are red and sore sometimes. Anyone else? I know I've put on a bit of weight with all the drugs and inactivity but I don't think it's *that* much and I've never had stretch marks like this before!

As for the libido, between pain, side effects, wooly heads and feeling sick or whatever (from my additional IBS) it can be tricky to feel at all sexy - but the worst thing for me is actually the weight I've gained since getting really ill, whether because of the inactivity or meds or comfort food, who knows? :rolleyes: I can deal with the pain and finding ways of coping with the sheer boredom and lack of socialising etc etc - but not being able to wear nice, well fitting, comfortable clothes and having the energy to spruce myself up for my other half, and knowing I'm bigger and "curvier" than when we got together etc just does not help me feel at all attractive. Don't get me wrong - I know that he loves me and thinks I'm gorgeous (goodness knows why!:o) - but it's not the same if you don't feel it yourself is it..?

somebody_else

crutches wrote: »

Just got given my blue badge though so very happy with that.Makes so much difference now youngest is in school and no longer using parent and child spaces.Get LRC DLA but no mobility.might reclaim in a few months though.Got Inc.Ben medical coming up too.

I don't know if Thanatos would agree with this, but I'm fairly sure that the fact I'd recently been issued with a blue badge, and that I'd just had written confirmation from the council that they were going to be putting a disabled parking bay outside my house did go in my favour when I went to Tribunal when I first claimed DLA.

At that time (I don't know if it's changed recently) the criteria for receiving the HRM and the BB were the same.

So if you decide to claim again, do make a point of mentioning the Blue Badge on the form.

bigzippy

Careful_with_that_Axe wrote: »

I'm in a similar situation and feel the same as you, that I don't have enough energy or brain space for another person in my life. I was curious whether this was another symptom of AI probs, or meds, or just me! :rolleyes:

and, yup, that "joke" does sum things up neatly

I was the same, and was happily single thanks very much... then one day I started talking to an old friend from college on Facebook, started chatting on messenger and then met up for a drink or two... as friends. A few weeks later we were together as a couple and I've never looked back - I love him to pieces and he looks after me sooooo well. I hope that if/when you are ready for having an OH that the right person comes along at the right time, just like my lovely fiance did

Sorry if that was sickening!!

(btw, this might be sacrilege... but what does AI stand for?)

Careful_with_that_Axe

How lovely for you bigzippy! Didn't make me feel nauseous at all, just very warm and snuggly for you.
Sorry - AI is Auto-Immune. I'm a mere honorary member as I don't have fibro. Instead I have Lupus, Mixed Connective Tissue Disorder and T-Cell Lymphoma.
I have come to the conclusion that all AI diseases share symptoms and the only defining point between them is that special diagnostic flag that the medics look for to say which one you have. I think many people have all the symptoms of an AI problem, but go undiagnosed as, without that flag, medics can't label which one it is.
J
x

bigzippy

Careful_with_that_Axe wrote: »

How lovely for you bigzippy! Didn't make me feel nauseous at all, just very warm and snuggly for you.

Good! Cheers
How many more times do you think I can mention my wedding without becoming a wedding bore? :rolleyes:
On the subject though - has anyone here had a wedding whilst suffering with FM or ME or anything vaguely related. I'm worried about how I'll be on the day and am trying to do everything now to makes sure it's as pain and hassle and energetically demand-free as possible!

Unity

Hi all,

I’m Unity and I’m a fibroholic!

I think I’ve finally got through all the posts on here, when last I looked there were only two and I never dreamed there’d be so many. When I was diagnosed hardly anyone had heard of fibro :rolleyes:.

My problems started in the 70’s following a couple of accidents. I was diagnosed in 1994 with secondary fibro, CFS, cervical and lumbar spondylosis, scoliosis, Raynaud’s, osteo-arthritis, early onset osteophytosis and a bone cyst in my thigh. Since then I’ve had a positive MS diagnosis from one neurologist, revoked by another, but definite neurological problems including a lipoma in the meninges and abnormalities in my hypothalamus. Three failed lumbar puncture attempts left me with arachnoiditis and a recent x-ray shows I’ve been living with a fractured pelvis, fused vertebrae from L3 to S1, a trapped sciatic nerve and a bony growth over the vertebrae. This explains the failed lumbar punctures – since the doc was trying to push the needle through bone :eek:. I’ve recently been diagnosed with IBS and the beginnings of diverticulitis. I have tinnitus as well and have heard this is also related.

My immune system is also duff and I get recurring cranial shingles – three separate attacks in the last ten days – the blisters are finally going.

Some research was carried out on a group of US marines and concluded that sleep deprivation produced FMS symptoms in these previously unaffected fit young men after just seven nights. This is detailed in: "Fibromyalgia and Chronic Myofascial Pain Syndrome: A Survival Manual" by Devin J. Starlanyl and Mary Ellen Copeland (Paperback - Jul 1996).

Therefore I just wondered if anyone else suffers from the associated sleep disorder involving REM sleep rather than insomnia? At first I was diagnosed as narcoleptic but I underwent investigations in a sleep lab that confirmed I start dreaming within 30 seconds of falling asleep and I never reach Delta (restorative) sleep. I don’t have sleep paralysis either so I often move around in my dreams – trying to escape vampires, zombies, wasps etc. and have even taken four sleeping tablets instead of half a one – because I dreamt I couldn’t get to sleep! My dreams are more vivid than reality so I’m not really surprised that I feel shattered and ‘unreal’ for a lot of my waking time.

That’s probably enough for now – well it’s enough to type anyway.

I'll say sleep well - although I know it's a fond hope :rotfl:.

raeh

im glad i mentioned the bruising, i wasnt sure if it was anything to do with the fms or not, elmostreet i seem to get lots of bruises on the tops of my hands and cant remembber knocking them, i get fabulous coloured ones on my arms and im sure people think im being beat up lol

big zippy thats a lovely story its fab to hear something happy these days i went to my sisters wedding in may and i was worried about managing the day but i rested for a couple of days before hand and afterwards and when ever i felt like sitting down on the day i did

it seems to be quite random the things people claim and are allowed? i get the mobility but not care and people get care but not mobility. The main reason i dont get the care element apparently is the fact i manage to care for my own family.. no matter how difficult i find it somedays, i still feed and look after the kids!! im thinking of getting a BB , iv never bothered before but recently i think it would make it much easier to get round the supermarket knowing i havent had to walk miles to get there in the first place and dont have to push a full trolley far afterwards across the car park.... it just seems another step of giving in applying for one? im not sure if that sounds odd

oh and that joke sums things up perfectly :rotfl: