Fibromyalgia (part 2)

bigzippy

P.p.s. and now the buttons are back! :rolleyes: What's that about??

Careful_with_that_Axe

bz That sounds like an absolute feast! Brilliant idea for a pressie too - well done DF.

Veggy We all feel like that from time to time. Lurk all you want and just wave at us rom time to time so we know you're OK. Hope all goes well tomorrow.

I'm in one of those moods where I can't concentrate on anything on TV, so I think I will have a rare early night as I am tired.

Sleep well all.
x

bigzippy

Careful_with_that_Axe wrote: »

bz That sounds like an absolute feast! Brilliant idea for a pressie too - well done DF.

Thatz coz I iz a pimp innit!

Sleep well chuckles.

Unity

littlewren wrote: »

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.

Welcome Little Wren :hello: I have fibro and M.E. too on top of a load of other things :rolleyes:. Were the sleeping tablets Zopiclone or Zimovane? I have these, but gradually stopped taking them. I occasionally have one on a Friday or Saturday night - to get a bit better sleep as you are right, they do stop being effective as you become used to them. I've also got a sleep disorder that means I start to dream within 30 seconds of falling asleep and I don't get into Delta sleep at all :eek:. Docs reckon it drives you mad and the people on here would probably agree that I am:rotfl:. I was in a sleep lab with all the electrodes fitted at 9.30 in the morning and despite all the noise and banging doors in the coronary care unit next door - I fell straight asleep and the above scenario showed up on their machines. I had dreamed that a doctor in surgical scrubs had entered the room and asked me if I wanted a cuppa .

If you get the chance, have a look at the book 'Fibromyalgia and Chronic Myofascial Pain Syndrome' by Dr Devin Starlanyl http://www.amazon.co.uk/Fibromyalgia-Chronic-Myofascial-Pain-Syndrome/dp/1572242388/ref=sr_1_1?ie=UTF8&qid=1246831082&sr=1-1 .I found the research amazing! Evidently they took a group of US Marines and kept them without sleep for over a week. At the end of that time they had all developed the symptoms of FMS/CFS. Over the years I've met or corresponded with a number of people who seem to share the same sort of fibro/ME story: a trauma of some sort, either physical or emotional, followed by a period of sleepless nights, followed by increased pain and lethargy etc. etc. In my case I was 12 years old and hit on the head with a brick by a boy in my class causing me to lose consciousness and blinding me for two days. Until that point I had not had any sleep problems, I was one of those kids whose head hit the pillow and I was there till the next morning - only very rarely remembering my dreams. A knock on the head, nine stitches and a concussion later and I've never slept properly since.

BZ - I do hope the wheelchair use turns out to be short lived, I always found it very stressful too and at least on crutches I don't have to crane my neck to communicate;). I used to bargain with DH that we'd put it in the boot and if I couldn't manage he would go and get it . Mind you when we do go out I plan it like a military campaign, getting him to park as close as possible and making sure the trip is economically planned in terms of how far I need to walk, where I can stop and rest etc.

PCL - Unfortunately the counselling comes after the decision which seems a bit back to front to me. I'm going to do as much research as possible and see if I can contact the MacMillan nurses myself.

bigzippy

Unity wrote: »

BZ - I do hope the wheelchair use turns out to be short lived, I always found it very stressful too and at least on crutches I don't have to crane my neck to communicate;). I used to bargain with DH that we'd put it in the boot and if I couldn't manage he would go and get it . Mind you when we do go out I plan it like a military campaign, getting him to park as close as possible and making sure the trip is economically planned in terms of how far I need to walk, where I can stop and rest etc.

I only use it when I know whatever I need to do is too much to do under my own steam. Eg. Ikea takes more like an hour and half to walk round, plus the queues...not gonna happen. Quick to the shops however is fine. Etc. I know what you mean though and thanks for the concern. I'm just trying to proactively get some control back and "manage" (hate that bleedin word now!) it all. I don't intend to become "lazy"/use it too liberally, iyswim. ...Not that I even have one yet. We borrowed mil2b's yesterday.:rolleyes: I know all too well what you mean about neck-craning! Hurts dunnit!? :shocked:

Unity wrote: »

PCL - Unfortunately the counselling comes after the decision which seems a bit back to front to me. I'm going to do as much research as possible and see if I can contact the MacMillan nurses myself.

Agreed. Superlative idea there Unity. I would want to know the most possible too, and I never find the consultants etc that "offer" these choices to be all too forthcoming...or is that just me...? :rolleyes:

mesb210776

Hi
I've just found this post and would like to join in with yourselves. I'm 32 and self diagnosed (but had confirmed with doctor) FM in Feb. I've had sciatica since I was 11 and problems with my back since my 1st son was 4 months old (I was 24). Have had MRI scans on back and have prolapsed disc at L4/5 and a small bulge at T2.
Since I was preggers with 2nd son (29) I started having problems with my wrists, shoulders, neck etc. I also developed eczema on my hands and feet. This is what led me to FM. I get bad eczema on hands and I was fed up with it, so I logged on to wikki. After looking at eczema and finding I probably had discoid eczema, I looked at other symptoms. They included IBS and after looking at that I realised I probably had a mild form of this too. Then looking at related illnesses I saw FM. I read the symptoms and showed my hubby who said that's you.
I went to doctor, who said although I was young, I probably had FM, but that there's not much that can be done about it as I'm already on tramadol, cocodamol and ibuprufen.
I'm on IB at mo, have just got a blue badge, but have just had a letter from DLA saying I can walk too far. The problem is with the sciatica. It has gotten much worse over the last 6 months and on DLA form told them I have severe pain after walking upto 50 metres, same as on blue badge form, but they say I can walk for over 100 metres with no pain! Going to CAB to get help with appeal. Also doc has said I can have op on back, but I would have to lay flat for 3-6 weeks after lol. Got 2 kids so that's not going to happen. I've had a sciatic attack :eek: for the last 3 months now and I'm finding it increasingly difficult to walk, doc has now suggested I look at getting a stick or crutches. I thought they sorted that out.
I can go to sleep at 10pm and not get up til 8am, having slept through, but feel like I've only slept for 1/2 an hour. I nap sometimes, but with a 3 year old that can be quite difficult.
Sorry I've rambled sooooo much. I'll not write so much next time!!

Careful_with_that_Axe

Welcome mesb. We're getting a lot of new people here recently which is lovely. You write as much as you want to - I wrote pages when we first started up as it was such a relief to find people who understood that I got lots off my chest.
I'm a fake on the site as I have Lupus and Lymphoma, but my pain is so similar to FM etc pain that it works for me.
Lots of us have the other symptoms such as IBS, excema and sleep problems.
Doc can give you a referral to Physiotherapist or (Social services?) to get crutches etc. Good luck with the DLA.

I'm awake at stupid o'clock and no sure why I've had such a bad night. I've had some stomach pain, but I think unease about previous landlord playing silly boogers is playing on my mind more than I thought. I am in the right legally and morally, but it's still a bit of a worry. Have the digital photos I took of the condition of the flat (the damp etc) to back me up though.

Hope you're all having sweet dreams and, bz, please turn over - you're snoring.

Careful_with_that_Axe

Forgot to say, Unity Good luck with finding all the info/counselling you need to set your mind on a clear course. It is a bit "@rse uppards" for counselling only to be on offer afterwards.

Sue Much as it pains me to say it (*g*) Cellulitis is a good suggestion of bz's. It's a vascular condition that is quite common when your immune system is depressed and can take a while to physically show itself and temperature etc with no obvious cause is often the first sign.

purplecatlover

morning all

mesb welcome, we dont mind rambling here, well ok i dont mind rambling here, its nice to read so dont worry about writing less unless you have got less to say.

welcome litlewren, of course its ok for you to hang around, they are a lovely bunch of people in here, and your right, there is a great community feel about the place.

cwta hope your asleep again now, perhaps a nap later today if not? hope it is a one of bad night.

bz and littlewren wren the other z drug is zolpidem. oh there is also a third one but i cant remember what its called, its not as commmon here though.

unity thats a wonderful idea to contact the nurses, good luck with making the decision, if it helps to come and discus i will always listen, feel free to pm anytime k.

bz just the thought of saturday shopping crowds is enough to make me never ever ever try to deal with it. have you ever managed to catch the wheelchair person yet or is it still voicemail tag there?

*waves* to all the lurkers and everyone else, dont forget to pop out and say hi once in a while so we know your ok.

suep

Morning all and welcome mesb, I was 32 when I was dx with Fibro too, my kids were 14,11 &6, it was really hard and I dont know how I ever managed especially as I kept working for 4 years in a rest home. Eventually I had a really severe flare that kept me in bed for months and I've never been well enough to work since then. Life is a bit easier these days as the 'kids' are now 27,24 & 19, only the youngest is still at home, but I have 2 little grandkids and another on the way , I can only cope with them for a little time as they exhaust me and I usually end up in a flare whenever I look after them, so I really admire Fibro Mums with little ones.
I have chronic sciatica too and either walk with a stick, crutches or if Im really bad I use a wheelchair or my electric scooter, the g/ks love riding on my lap on it it's almost constant now, Im seeing the Rheumi on Wednesday and my gp has said I should ask for a scan, I dont know why he couldnt contact him himself, they wont take any notice of me I doubt.
Good Luck with your appeal, I wonder if the people who decide whose having it can even read sometimes, they seem to twist everything round, and ignore any info they dont like.

Im taking it easy again today as Im still in a lot of pain from walking round the hospital and having g/s on Saturday. It's a bit cooler here at last. I hope everyone has a good day.