Fibromyalgia

longforthesun

With me its the local hospital my friends think i should have my own parking space in 3 years I have seen the cardiologist, Rhuematologist, Plastic Surgeon, Gynagologist, Breast Consultant, Xray dept, Dermatologist and had day surgery and Ultrasound Dept and I still feel ill!

Will update when i have seen DR.

Edit: Should say that not all these appointments relate to FM and although i may sound like one I am not a hyprocondriac (sp) just been one thing after the other these last few years. Thankfully nothing life threatning.

somebody_else

longforthesun wrote: »

With me its the local hospital my friends think i should have my own parking space in 3 years I have seen the cardiologist, Rhuematologist, Plastic Surgeon, Gynagologist, Breast Consultant, Xray dept, Dermatologist and had day surgery and Ultrasound Dept and I still feel ill!

Will update when i have seen DR.

Edit: Should say that not all these appointments relate to FM and although i may sound like one I am not a hyprocondriac (sp) just been one thing after the other these last few years. Thankfully nothing life threatning.

Starting from the bottom - if you were a hypochondriac, the last thing you'd be worried about sounding like is a hypochondriac!

I think I'm running you a close second although in the past 12 months I've only been seen by Rheumatologist, Opthalmologist, A&E, x-ray, and my GP.

Prior to that I'd also been seen by Cardiologist, Pain Clinic (although they decided that I was actually 'coping' as well as could be expected with the pain, so they didn't see me more than twice), Psychiatry (I actually insisted on an admission to the local psychiatric unit in the end, I was fed up with being told I was imagining things, so I wanted a proper assessment and diagnosis if they could come up with one. The best they could come up with was 'anxiety' ("anxious? anxious?! some !!!!!! has ballsed up and put me on rapid morphine withdrawal, why do you think I'm anxious?!") and I was seen once by a CPN after I was discharged, whose report basically said, she's every right to be upset given the way she's been mucked about for the past 2 years, and that was the last I saw of her as well), neurology, MRI, CT, oh god, the list just goes on and on.

I also ended up at one point with a letter from gynaecology on my notes explaining that I'd been examined and that nothing untoward had been found, which I thought was rather clever 'cos that's about the only speciality that I've not been seen by.

Oh well, only another 20 years and I can add the geriatric services to the list as well.

Unity

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 agree with Somebody_Else, because I have what sounds like the same symptoms and it is trapped nerves with me. The pain in your hip, buttock, thigh and calf actually sounds like a trapped sciatic nerve - this is what I have the facet joint injections and the transforminal epidurals for.

The best socks I've tried I got just recently from Primark, they are really thick, they come in packs of two pairs - one fair-isle and one with hearts on in black, grey and white. I have a lot of problems walking - but I can recommend MBT shoes (Masai Barefoot Technology). I got a pair over four years back and have rarely had them off my feet! They are expensive - but show no signs of wear and they are like walking on air.

Your best bet for a proper diagnosis would be an MRI scan, rather than an x-ray - but this has to be ordered by a specialist, so it's probably referrral time . Do get it checked out though - anything to do with trapped nerves/nerve compression really needs looking at.

bigzippy

Well I've been asleep all day (literally til 5pmish)... but I took an extra dose of Amitriptyline last night to prevent the night befores issues, so I expected to lose the day. Thankfully I also lingered in a hot bath last night (with the hot tap keeping it nicely topped up ) and i didn't have the same problems with the nerves last night - phewf! :j I'm gonna try and pick up on all the bits I wanna...but I know I'm gonna miss some out, so sorry in advance!

TOBRUK wrote: »

I do try to get dressed everyday (at least for a couple of hours, or as long as possible) but there are days when it is impossible. If I don't I feel terrible, guilty, especially if someone calls during the day and I'm in my pyjamas!!

A pyjama party? Hmm, I think that is a good idea :rotfl:Perhaps start a pyjama appreciation society!;)

I feel like I'm a hamster in hibernation or something if I don't at least attempt to get dressed for a wee while in the day - especially in winter. It seems to be dark all the time in Winter for me, I seem to completely miss the hours (or is it minutes? ) that opening the curtains is worthwhile!

The pj appreciation society sounds like a grand idea :T

I don't think I know how to multi-quote so we'll see what happens...

Careful_with_that_axe wrote:

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.

Have been in so much pain that it's been making me vomit.

...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!

p.s. Thanks to whoever recommended Aloe Vera gel to assist healing. Ordered some yesterday.

Lol @ whipping it off with "gay abandon" - it gave me a little image then :rotfl:
Hope your pain got better through the day
Thread veins... do you mind me asking how old you are? I have thread veins round my ankles, which really just shuoldn't be there at the grand old age of 26 :eek: I always blamed it on my being a tad pudgy...
When people ask me how I am i tend to say "not 3 bad" - it tends to make them think a little bit more than "I'm fine" and I've usually had a much worse day, or lets face it I probably wouldn't be there for them to ask anyway! :rolleyes: I did get told off though, from OH particularly, for whining about people not getting it and not believing I was really ill - but then not really telling them what was wrong, so how could they?

Hope the Aloe Vera gel does the job for you!

raeh wrote:

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?

I've always been strong - stronger than I probably should be - so it's been somewhat of a nasty shock to not even be able to pick up a bottle of water without struggling these days.
I got to the point where I got bruising on my muscles etc and just get OH to do it all now

raeh wrote:

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

I find that it brings me down to realise all the things that hurt etc if I have to sit and think and list them all too. I get worried it sounds like I'm just a collection of petty pains too.
I know exactly what you mean about the pain"sympathisers" -they drive me crazy. And I'm glad I'm not on my own with the sympathy...or the lack there of!

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.

I would be the same. They couldn't guarantee me that any of my problems were coming from my tonsils, said it was a riskier procedure to do on an adult and told me of the grim risks and that was enough for me to turn em down! I don't wanna feel worse with healing scabs/scars, thanks very much!

Well, I think this is a long enough post now... and my concentration is waning... so I'll answer the rest after....well probably after the end of Strictly

Unity

somebody_else wrote: »

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.

Thanks for this, I can't help being cautious - I'm afraid I've been a bit unlucky, much like yourself it seems. I fractured my ankle in two places when I was 12 and had it set by a very overbearing orthopaedic surgeon, just in his office and without anaesthetic. He grabbed my foot with one hand, my leg with the other and twisted in opposite directions - producing a very loud crack! My poor dad was horrified and he already had a weak heart. The plaster cast was put on straight after, but the swelling hadn't stopped so my toes started turning black (emergency removal next morning). It's all been down hill from then on including a brick attack, industrial accidents, misdiagnoses and of course the attempted spinal tap, trying to poke a needle through bone :eek: . I've also run the gamut of departments, rheumatology, neurology, urology, cardiology, dermatology, and orthopaedic - some of them useful but mostly (albeit well meaningly) clueless.

I think there's a certain amount of personal responsibility involved to ensure we don't just become another experiment or statistic - especially if it is going to cause us more pain and discomfort.

somebody_else

Unity wrote: »

It's all been down hill from then on including a brick attack, industrial accidents, misdiagnoses and of course the attempted spinal tap, trying to poke a needle through bone :eek: . I've also run the gamut of departments, rheumatology, neurology, urology, cardiology, dermatology, and orthopaedic - some of them useful but mostly (albeit well meaningly) clueless.

The spinal tap sounds horrendous.

Do you have a problem with local anaesthetics not taking properly? I have this problem and a lot of doctors don't believe me when I tell them. I've also had 3 cerebral angiograms and the doc who did them ignored me when I told him that LA hadn't taken properly - 'til I screamed and burst into tears. At which point he sighed very loudly and gave me some more.

Unity wrote: »

I think there's a certain amount of personal responsibility involved to ensure we don't just become another experiment or statistic - especially if it is going to cause us more pain and discomfort.

I think you're right - I suspect that if I'd not put a stop to it, I'd still be being sent hither and yon for more [invasive] tests, but to be honest I've been symptomatic, to a greater or lesser degree for a good 20 years. I think the time has well and truly come to accept it and live with it. There's going to be no miracle cure. They're probably not going to get to the bottom of it 'til I'm on the post mortem table - if then.

bigzippy

somebody_else wrote: »

The spinal tap sounds horrendous.

Do you have a problem with local anaesthetics not taking properly? I have this problem and a lot of doctors don't believe me when I tell them. I've also had 3 cerebral angiograms and the doc who did them ignored me when I told him that LA hadn't taken properly - 'til I screamed and burst into tears. At which point he sighed very loudly and gave me some more.

I was in floods of tears during a "simple" colonoscopy. They were pumping drugs into my canula and I still couldn't make it all the way through. I told my GP about it and he was very interested that I'd had such pain when it shouldn't've actually been anything more than "routine"... he suspected something with my nerve endings then... and that was way back when, last year.

somebody_else

bigzippy wrote: »

I was in floods of tears during a "simple" colonoscopy. They were pumping drugs into my canula and I still couldn't make it all the way through. I told my GP about it and he was very interested that I'd had such pain when it shouldn't've actually been anything more than "routine"... he suspected something with my nerve endings then... and that was way back when, last year.

Interesting.

I also had a [thing where they stick a camera down your throat, into your stomach and have a look around before pulling bits off the stomach lining for a biopsy] and having pretty much reached the screaming ab-dabs point by then opted to have it done under sedation 'cos I'd been told I wouldn't remember any of it afterwards.

They lied!!!

I'm fairly sure that it's all down to neurological damage, but as I'm not a doctor, what could I possibly know?

Unity

bigzippy wrote: »

Well I've been asleep all day (literally til 5pmish)... but I took an extra dose of Amitriptyline last night to prevent the night befores issues, so I expected to lose the day. Thankfully I also lingered in a hot bath last night (with the hot tap keeping it nicely topped up ) and i didn't have the same problems with the nerves last night - phewf! :j I'm gonna try and pick up on all the bits I wanna...but I know I'm gonna miss some out, so sorry in advance!



I feel like I'm a hamster in hibernation or something if I don't at least attempt to get dressed for a wee while in the day - especially in winter. It seems to be dark all the time in Winter for me, I seem to completely miss the hours (or is it minutes? ) that opening the curtains is worthwhile!

The pj appreciation society sounds like a grand idea :T

I don't think I know how to multi-quote so we'll see what happens...



Lol @ whipping it off with "gay abandon" - it gave me a little image then :rotfl:
Hope your pain got better through the day
Thread veins... do you mind me asking how old you are? I have thread veins round my ankles, which really just shuoldn't be there at the grand old age of 26 :eek: I always blamed it on my being a tad pudgy...
When people ask me how I am i tend to say "not 3 bad" - it tends to make them think a little bit more than "I'm fine" and I've usually had a much worse day, or lets face it I probably wouldn't be there for them to ask anyway! :rolleyes: I did get told off though, from OH particularly, for whining about people not getting it and not believing I was really ill - but then not really telling them what was wrong, so how could they?

Hope the Aloe Vera gel does the job for you!



I've always been strong - stronger than I probably should be - so it's been somewhat of a nasty shock to not even be able to pick up a bottle of water without struggling these days.
I got to the point where I got bruising on my muscles etc and just get OH to do it all now



I find that it brings me down to realise all the things that hurt etc if I have to sit and think and list them all too. I get worried it sounds like I'm just a collection of petty pains too.
I know exactly what you mean about the pain"sympathisers" -they drive me crazy. And I'm glad I'm not on my own with the sympathy...or the lack there of!


I would be the same. They couldn't guarantee me that any of my problems were coming from my tonsils, said it was a riskier procedure to do on an adult and told me of the grim risks and that was enough for me to turn em down! I don't wanna feel worse with healing scabs/scars, thanks very much!

Well, I think this is a long enough post now... and my concentration is waning... so I'll answer the rest after....well probably after the end of Strictly

See, you do know how to multi-quote after all :dance:.

I was also one of the strong types - people always gave me the jars and bottles they couldn't open and I could arm-wrestle blokes - but only with my left arm . When my girls were little I had a Silver Cross double buggy (really heavy - even without passengers) and loved to walk for miles with the result - I had arms like Popeye . These days I couldn't knock the skin off a rice puddin':o. Like everyone else here, I hate to have to ask for help, but the biggest loss is the manual dexterity to do fiddly little jobs - it really frustrates me :mad:.

I'll bet there are lots who will identify with this as well. When I do go out, during the day ( I am never out after dark, I have wilted by then) I like to put my make-up on and have my hair looking reasonable and as a result people who don't know me, think I can't possibly be ill. The thing is that it makes me feel better to look better and that's the important thing I think. If people call in and catch me unaware - they realise how bad things must be _pale_

I am beginning to wonder what 'grim risks' they didn't tell me about with the tonsils :eek:but I wasn't given a choice, they had to come out and that was that. I have to say though I was a lot better without them in my pre-fibro life :j. Excuse me for being really gross here, but I used to have pus filled blisters hanging like bunches of grapes down my throat, which was so swollen I couldn't swallow at all and had breathing difficulties. Once they had burst I would get a really high fever, but then I'd be on the mend. I think it was the glandular fever that finally sealed the fate of the tonsils - so they're gone, but not forgotten .

Well, I had a terrible night last night - I spent my time walking through a jungle, climbing over tree roots, then a desert and you know how hard it is walking through soft sand :sad: so whether my legs were aching and that caused the dreams or the dreams caused the pain I don't know, but I'm taking a Zopiclone tonight in the hope of a quiet night. Time for the PJ's :T

somebody_else

There are times, Unity, that the benefits outweight the risks.

Like when I had my wisdon teeth out, under a general - the bliss of not having infections every 2 or 3 months. Sod the fact that it took me about 6 weeks to get over the general - no more infections in them. I can honestly say that I've not missed the one bit.