Fibromyalgia

Careful_with_that_Axe

Hi all
Trackies are my attire of choice and, too, onlly get dressed to go out and then get changed again when I get back. It is so comforting to know you're not alone with daft-type things like this and whipping your bra off with gay abandon at every possible chance.

Had an awful couple of days after trying to lift a dishwasher that was obviously too heavy for me. Have been in so much pain that it's been making me vomit. Can sit upright today (just) - am seeing Consultant today to see about getting my thread veins removed which I'm looking forward to.

If friends ask me how I am, I tend to say that I'm fine because people don't want the true answers. Let's face it, if I said "well, this hurts, I'm having trouble with etc." they would soon lose patience.
My best friend says that because I minimise what's happening to me by saying that, I can't blame people for not realising how I feel. Don't you hate it when they're right!
However, when she phones me, she says she can tell frm my voice whether I'm OK or not and if she thinks I'm not, she presses me on what's wrong.
Thank God for good friends - even if they live 600 miles away!
Sorry to everyone who is in pain today and I hope you improve.
Off to stick Neurofen heating pads on back again.
p.s. Thanks to whoever recommended Aloe Vera gel to assist healing. Ordered some yesterday.
Take care all
jo
x

raeh

good morning everyone i love saturdays as i can take the painkillers and allow myself more time to get moving as i dont have to rush. I want to keep going to work in the week as im only there 3 hours and can rest when i get home but its very tempting in this cold and dark weather when im asked if i need a sick note for a while to say yes :rotfl:

thanks for all the great replies, it really is such comfort knowing we arent alone :T


i love my pj's in an evening and big thick socks for my permanently cold feet i dont wear trackies but i do wear very loose comfy trousers or linen trousers for work and a soft plain sweater? its sort of my own uniform, we have recently been told that jeans arent appropriate wear for in work and i just said oh i cant wear jeans anyway as they are uncomfy and people looked at me like i was mad :eek: i like things that arent tight or have bits that wont stick in and leave bruises

CwtA i hope you are feeling better now. I do things like that regularly - i lift something that i really know i shouldnt but its far quicker at the time than waiting to ask someone- the thing is i dont actually have trouble lifting things in my arms, its more i cant pick things up with my hands? im quite strong to lift big things. Its the the next day when i have bruises on my muscles [how do they happen??] and my arms feel like i was weight lifting for a week?

also CwtA i almost always say im ok when people ask, who wants to say well actually ... and reel off a huge list :rotfl: . Quite often though when you say you have a pain somewhere then the person asking will say oh i get that too, i know people dont mean to be like that but they just dont realise it isnt the same ! and im very unsympathetic

right iv sat long enough and i have a kitten walking across the laptop which isnt helping.

sorry if i have ignored any posts i meant to answer but as usual i get carried away with my typing [and constant correcting!!]

hope todays a good day everyone xx

Unity

somebody_else wrote: »

Oh yes! (Again!). When I was finally referred to my current Rheumatologist, she did pretty much every test she could think of - and when she hadn't got to the bottom of things, referred me to some colleagues (I can't decide if my lowest spot was the bone marrow biopsy, or going for what I thought was going to be a hearing test and finding out that he actually wanted to stick a camera down my throat and look at my vocal chords - sorry, forgotten what it's called). It all got a bit much in the end, and I had to ask for it all to stop.

Whilst I'm grateful to her for wanting to find out what is actually wrong (instead of what the other Rheumatologists had done which was send me for x-rays first and as there was no visible joint damage didn't bother seeing me), and I'm grateful that she continues to see and monitor me every 6 months or so, the poking and prodding and having bits removed for biopsy was all just too much in the end.

I'm not just an interesting collection of symptoms, and like you I'm fed up with being seen as a 'challenging case'. But it seems churlish to say so when folk are only trying to help.

Hi, Somebody Else, I know what you mean. I used to see a rheumatologist who was particularly interested in FMS and ME and he sent me for every test going, plus he was up on all the current treatments. When he retired I was discharged back to my GP and although I also have a lot of musculo-skeletal problems I have refused attempts to refer me to either another rheumy or an orthopaedic surgeon. The pain clinic surgeon who does my facet joint injections said I might be able to find a neurosurgeon to chip away the bony overgrowth (I sound like a Klingon!) on my spine - but to be honest I am scared of ending up worse :eek: and he said there would be no guarantee that it would help.

Elmostreet wrote: »

does anyone else get alot of swelling with their FM? I seem to be full of the stuff in my stomach from IBS, my ankles and my face . I also have hip bursitis in both hips which I;m getting more steriod injections for next tues which will be a blessed reliefm since walking can be a problem.
Hope everyone has a splended weekend!:j

Hi Elmostreet, according to 'specialists' (and I use that word reservedly) there is no swelling/inflammation with FMS. I am sure though that others will disagree with that pronouncement . I have swelling, but whether this is due to the other arthritis/RSI problems or FMS is anyone's guess.

Hey - the sun is out! However it is blowing a gale - still, much better than when I first got up and it was persistently pouring.

Unity

Hi to those of you on Ami :hello:.

I mentioned before that I used to be on this many years ago - but it made my sleep disorder worse, as it is a known side-effect. I also found I gained weight on it and used to have terrible cravings for sweet things.

If you experience these or any other problems and don't know already - there is a much better drug Nortriptyline, which doesn't have so many side-effects, but it isn't widely advertised as it's more expensive.

I don't take it myself, but I have friends who do and who have found it to be a lot more beneficial. It was also recommended by the specialist nurse at the pain management course I attended last year.

I hope this info helps someone.

somebody_else

Unity wrote: »

The pain clinic surgeon who does my facet joint injections said I might be able to find a neurosurgeon to chip away the bony overgrowth (I sound like a Klingon!) on my spine - but to be honest I am scared of ending up worse :eek: and he said there would be no guarantee that it would help.

That would worry me as well, although I have heard of someone else who had this problem (first diagnosed with ME) who went ahead and had it done and it did bring about quite a relief of her symptoms.

Having said that, I'd be very wary of any surgery that was as likely to leave one in a worse state as improve things. I think the worst thing would be to go through a procedure like that and end up no better off than one started.

sharon59

Elmo-l get lots of swelling of hands feet and tummy and go to a support group and it seems a common fibro thing despite what the drs may tell you!
Dont think this dull cold weather helps although if its above 70f l also get worse so no pleasing me!

longforthesun

I get very cold feet but recently I have noticed my 2 smallest toes on my left foot go numb even when its not very cold I also get pins and needles on these 2 toes and no where else. Like most folk with Fibromyalgia I tend to put things like this down to my FM but latley it has been getting worse and I am a bit worried. I keep meaning to make an apointment with my DR but it goes away and i forget to make my appointment. Does anyone else get this?

Had a very bad night on thursday pain in my left hip, buttock, thigh and calf I could not walk on it only my knee was not sore so had to get up the stairs on my hands and knees. A hot hot bath helped alot but it gets me down when I get like this I am in my early 30's and feel about 80 at times especially first thing in the morning. God help me when I am 80.

somebody_else

longforthesun wrote: »

I get very cold feet but recently I have noticed my 2 smallest toes on my left foot go numb even when its not very cold I also get pins and needles on these 2 toes and no where else. Like most folk with Fibromyalgia I tend to put things like this down to my FM but latley it has been getting worse and I am a bit worried. I keep meaning to make an apointment with my DR but it goes away and i forget to make my appointment. Does anyone else get this?

Had a very bad night on thursday pain in my left hip, buttock, thigh and calf I could not walk on it only my knee was not sore so had to get up the stairs on my hands and knees. A hot hot bath helped alot but it gets me down when I get like this I am in my early 30's and feel about 80 at times especially first thing in the morning. God help me when I am 80.

I'm not a doctor, but that sounds like it could be a trapped nerve. You do need to go and see a doctor about it.

I, too, suffer from very cold feet - except when they're burning. I've found that a wheat cushion is very useful in helping to keep them warm, but that's no good when I'm out.

longforthesun

Thanks somebody_else I will make an appointment. I fell like I am never away from my GP but she is very understanding trouble is everyone likes her and it takes ages to get an app with her but will call on Monday.

somebody_else

longforthesun wrote: »

... I fell like I am never away from my GP but she is very understanding trouble is everyone likes her and it takes ages to get an app with her but will call on Monday.

I did suggest, at one point, that they just set up a bed for me in one of the consulting rooms, it felt like I was there so often.

I quite understand your reluctance to go (not to mention forgetting about it when it's not causing a problem - I'm fairly sure I've mis-lead more than one doc when asked if I get certain symptoms, 'cos if it's not actually happening when I'm asked, I forget it's happened in the past and just say no), but I think if you we're a hypochondriac or not a genuine case, you'd be there like a shot.