Fibromyalgia (part 2)

littlewren

Hi,

I have just noticed this thread so I hope you don't mind me hijacking it!

I have M.E. which I have had for about 21 years now and have been unable to work for most of that time. When I went to see my GP about something else a few years ago, he told me I also had Fibromyalgia. What I don't really understand is how he diagnosed that, because I thought that Fibromyalgia and M.E. kind of overlapped with the symptoms - muscle and joint pain, headaches etc.?

I also have Meniere's Disease (build up of fluid in the ears) and I'm taking Betahistine for that. I'm also going through the menopause (flipping thing!) so the hot and humid weather of last week has left me feeling wrung out as I've hardly had any sleep because of the hot flushes at night combined with the humid nights. I'm not on HRT because I'm too scared to take it because of the horror reports you read. I suppose I'm most scared of heart attacks and blood clots, because I'm not active due to the M.E.

I take Nitrazepam at night, which I've been doing for years as I've been a lousy sleeper for a very long time. When I saw my GP about 4 years ago, he said that Nitrazepam was going to be phased out (so I soon wouldn't be able to request it) and that Dothieping (Dosulepin) was being prescribed for people with M.E. as, although it's an antidepressant, its 'ingredients' have been shown to help with the muscle and joint pain.

So I slowly came off the Nitrazepam and onto the Dothiepin. After a few months, I was sleeping worse than ever so I went back to my GP (a different one) and he said I could go back to taking Nitrazepam and taking 2 Dothiepin also. I've been doing this ever since, but of course they stop working as effectively after a while, so now I'm stuck on Nitrazepam and Dothiepin, without getting a decent night's sleep (I keep waking up then having problems getting back to sleep again).

I'm a bit fed up at the moment and I noticed this thread and just hope it's the right one to post. Please tell me if I've come to the wrong area.

If not, hope to hear back from someone soon. You all sound a lovely bunch of people.

Carrie

kassandra

Hi Littlewren, everybody here is great and a fab support. We moan and laugh at and with each other. You're very welcome. I know what you mean about M.E. and Fibro as it says that it's M.E if the fatigue is worse than the pain and fibro if the pain is worse than the fatigue (that's what I read somewhere anyhow) but what if you have both and the fatigue is just as bad as the pain and vice versa but just on different days iyswim? It's very confusing.

Charlie is great thanks suep. I'm looking forward to moving but just can't seem to get the motivation to start. My sisters and my friend are coming round tomorrow to help so I'm sure they will give me a kick up the posterior!

I think there is something wrong with my wii fit. It says DS2 has lost 8st 4lb in a week! He only weighs 3st 7lb and the wii fit gremlins are worried about him :rotfl:

bigzippy

Ok...where to start??

With myself I guess just to give suep something to read, obviously

I went to Madchester with DF yesterday to try and sort the florist out for the wedding (:doh: obviously!) and we got there, parked up and the stupid place was closed! On a Saturday! So now I'm rather dubious about trying them again as it concerns me greatly that they would shut on a Saturday and there wasn't even a sign in the window...might have to search yet again for another place...:rolleyes: So then we decided to mooch about while we were there, got some lunch from a hotdog/burger vendor and went to the suit place to see if we could pick the shirts etc - but you can't take the shirts out of the packets, unless you buy them, try them at home and then bring them back! Does that make any sense to you?? DF needs to try them, specifically, because he has tattoos and needs to make sure that the white shirts they pick won't show them through...:rolleyes: By this point DF was getting rather fed up of Saturday city crowds, who 99% seem ruder than ever to people in wheelchairs and the glares we got was ridiculous so we headed back to the car, but in a last minute feeling of bravado/compassion DF took pity on me and took me into Primark as I've been wanting to go for a while to see if they've any cheap tops for me After about 10mins of crowd battling, and after seeing the queues, I took pity on DF and told him to just take us back to the car.:o So that was a wasted trip to the city :cool: So then we decided to go to Tescos and try to get the rest of the vases for the centrepieces, but no dice, cos they didn't have any in stock (for the second time now, eek!) so we got some "bits" that we needed....£104 later we left! :shocked: To be fair tho, I did get two pairs of those sort of roll-upable thin summer pants in different sizes cos I cba with changing rooms and wasn't convinced that the sizing on them was right. I was right, as I tried them on at home and didn't like either, the sizing was wrong and so was the cut, so they'll be giong back, plus the top (that's like one of those kaftan type things) cos the cut was weird on that too. I have a few of those kaftan type tops and they're normally great for being comfy and not too hot and you can put vest tops underneath them, and they're usually cheap, but I've not found any lately that I like...:cool: Plus DF bought a pair of long camo shorts so half of the money was food (which was in/on budget) and the other half was clothes, the majority of which is going back! Which of course I'll have to keep reminding myself to do :rolleyes:

So nothing was done for the wedding, and we were both knackered from a day of fluctuating heat, and crashed out to watch the Mummy on dvd and then Sister Act was on the tele when that finished, and then after that (like 10.30pm) I decided I couldn't hack my horrendous headache, that was getting further and further into migraine territory, anymore and took myself off to bed with a cold flannel on my bonce. DF however stayed up til 5am cleaning!! :shocked: The house looks MUCH better tho and I'm very appreciative Felt better this morning, but I've been going through all the clothes and sorting them properly in the wardrobe this afternoon (well I had to really after all the effort he'd put in!:o) and I think I've sweated more out than I've put in so I'll have to guzzle a gallon of water before another migraine springs up on me..! We've got a couple of friends (who are a couple iyswim ) coming over after cos it's the fella's bday and we took pity and invited them round for a "bbq"...but of course we don't own a bbq and I begrudged the £5 for 2 disposables that Tesco were offering so it'll just be oven job with outside eating...providing it doesn't rain again!

What else can I give you to read suep...?

Suep I'll pray for your dad that the hospital find out where the infection's coming from and get it sorted out pronto! The last time I heard of that happening was a friend's partner's dad and they eventually found out it was cellulitis. Not sure if that's helpful or relevant but there we go!

sharon all I can do is pray for you m'dear. I hope that coming on here and venting/lurking/whatever helps you and that you know you're in our thoughts when you're not about. I might even give you some of my sparsely supplied hugs if you're not careful...

kass good luck with the move. Very glad you've got the keys and that it must mean your Credit Union malarky went through alright and you can take your life back into your own hands and get things sorted how you want them. Hope you find some energy/impetus/motivation from somewhere and get cracking hun.

saucy I can completely understand your reluctance re uni and going in etc. All I can say is that you'll feel better when you've met with them and have more of an idea what they're intending to provide/sort out for you etc. Unity's right about the Student Union stuff, I got loads of stuff sorted for me just for being partially deaf (it was before it was known that all these other conditions were lurking about undiagnosed) -incl. a top range computer with printer, internet, stationary, a minidisk recorder (to record lectures whether I was there or not)...can't remember what else now - but even the fact that the flourescent tubes kicked off my tinnitus was taken into account. It's well worth going to see them, they'll more than likely sort everything out for you and you'll feel so much better when you know it's in hand. The motability thing made me mad for you Hope you get it sorted hun.

cwta hope you enjoy the show today. No email yesterday cos of the migraine, and I doubt there'll be one today cos I'll be all typed out after this post! But I'll get round to it tomorrow hopefully Now DF's cleaned up I might even be able get those pics of the kitchen and the bureau thing!

Lw hang in there

Unity thanks for the heads up. After yesterdays migraine and the fact that I seem to be soooo much more sensitive to heat and the sun than ever, I'm debating whether I was right to pick Scotland in the first place... :cool: Altho if sister goes ahead with her plans for the Israeli "wedding" then I may have to take all that advice on board for that trip anyway....so it wasn't wasted

pcl and anyone else I've missed :wave:

:wave:littlewren you must've posted just as I hit the advanced reply button so just spotted your post before hitting submit. You have most certainly come to the right place We're not allowed to say much about medication etc for fear of being accused of giving medical advice...which of course we're not, so anything you read about meds etc is purely anecdotal I have ME and Fibro, and yes I would agree that it seems odd as a lot of the symptoms overlap - what I would say is tho that you'll more than likely get a different reaction when you mention each, even from doctors/DWP etc. I have Amitryptline which is also a drug that was more commonly used for depression (which of course put me off taking it in the first place :rolleyes:) and is supposed to help with sleep, which then helps with the rest of the symptoms. I'm not sure how much you know about ME/fibro (and I don't want to "teach granny to suck eggs" as cwta would put it ) the the commonest theory of cause of our symtpoms is that it's all to do with our sleep patterns/cycles and the fact that we don't stay in restorative sleep long enough, which screws up our ability to mend, so get more aches etc. - so in short, the better you get your sleep, the better you will feel. I would suggest going back to your GP again to see if there's something else you can try etc, rather than just accepting what you have as "your lot", iyswim. I'm also on Lyrica (pregabalin) which is from a family of drugs more commonly used for epileptics. It's only just starting to be used more for people with fibro, so if you've not discussed your meds with your GP for a while, you may be missing out on something that may help you.
Please feel free to stick around and ask as many questions as you like, or just stay and chat and shoot the breeze. We're all from varied walks of life and with various conditions and symtpoms, so I'm sure that you'll find some interesting tidbits, whether health related or not

bigzippy

P.s. ....10 weeks TODAY!!! :dance: :beer::j:T:dance:

littlewren

Oh what a lovely lot you are! I didn't expect a reply so soon, thankyou. Yes kassandra, I know what you mean about the fatigue versus the pain, it gets very confusing. My GP simply said 'you have fibromyalgia too' and gave me a leaflet on it.

I forgot to say bigzippy that in between those times I mentioned, I did actually go back to see another GP and explained that I was getting awful sleep and he put me on something else beginning with 'Z' I think. This gave me horrible hallucinations before dropping off which were awful, so I came off those and he gave me a different sleeping tablet, also beginning with 'Z' (what's my memory like!) The first night I took those, my sleep was amazing and I finally thought I'd found something that could help me. The next night though, I lay awake most of the night, so I came off those too and as I say, am back to Nitrazepam and Dothiepin. I will do as you suggest though and go back and see if there's anything else he can recommend (apart from knocking me over the head with a mallet!)

I will definitely hang around here if that's ok, it's got a really good community feel to it.

Bye for now, take care everyone.

suep

Welcome LittleWren, I've been dx with both too, it's not a lot of fun is it.
As the others have said though, you've come to the right place as everyone here is supportive and understanding. We chat about everything and anything really.

BZ Thanks for all your gossip, Im exhausted just reading about your day.
The most energetic thing I did today is go out with dh and dog in my scooter earlier, other than that Ive been resting on the sofa reading.

Thankyou to everyone for any prayers/healing vibes/ thoughts etc for my Dad, you are all lovely friends.

Careful_with_that_Axe

Welcome LittleWren. Stick around for general laughs, support and gossip.

bz What a busy weekend! You're sounding as though you're getting a bit happier though which is great. Good luck with the mock BBQ - has been raining on and off here today and we've had a severe weather warning for flash floods!

Kass I could sooo do with that sort of weight loss! *g* If you drop me your new address, I'll send you info I've picked up for you on camp sites in Cornwall. Good luck with the help for moving.

Sue Best sort of activity for a Sunday - reading.

Saucy Poor love about the mobility car! Hope you manage to get it straightened out quickly and easily.

I went off to the show only to discvover I must have dreamed the date as they're not even having a show this year! D'oh!
Came back here and went back to bed for another nap as Dad woke me AGAIN phoning this morning. I would have a quiet word in his shell-like, but I'll make sure his hearing aid is turned up. *g*

Hugs to all who need/want them.

veggyboy

Hugs to all

Sorry not feeling very friendly at the mo, I am reading, just not posting. Tomo is a new day and week, and I have a appointment with my GP so you never know I might be a bit more bouncy tomo pm.

bigzippy

Hmmm...my multiquote button's disappeared, along with the spam and other button...weird!

littlewren it's a pleasure to have you. Could one of the Z's be Zopiclone? I've had that before. I've just been given another one too that might be with a Z but can't remember cos I've not taken it yet iyswim We (the "regulars" anyway) generally pop in at least once a day, so there'll always be someone around to call on

suep I wasn't trying to exhaust you...but once I started I sorta couldn't stop my (virtual) mouth running!

cwta you donut! I hope you weren't too disappointed about missing the (never-existing :shhh:) show?
The mock bbq went quite well, esp as we don't generally socialise with this particular couple. We even had birthday cake with numbered candles and I made jelly last night I did mini (new) baked potatoes in the oven (which were sooo cute! And tasty too!) and corn on the cob, and some chicken/red onion/red pepper/mushroom kebabs and some tasty local sausages I was pretty impressed with my little feast, even if I do say so myself DF went out and got the birthday boy (who was 27 today! lol!) one of those little lego sets that was pirate themed with a little canon! Lol! He said it was his 2nd best present of the day! (but had to say that cos his gf forked out for the Stargate box set!:rotfl: ) Just hoping I sleep again tonight at a decent time...:rolleyes:

bigzippy

P.s. :wave: to veggyboy. Hope you feel perkier tomorrow then and all goes well at the GPs.