Fibromyalgia

Careful_with_that_Axe

Just wandered back in to say that some of my headaches are from identifiable causes. I have a tendency to get dehydrated and this is something that bring on a bonce pain. also, I think as a result of always being in pain, my shoulders are always hunched up round my ears which causes tension in the muscles which contributes to pain in the head.
I do consciously relax the muscles and bring my shoulders down, but it's easy to forget!
p.s. i also have sticky tissues everywhere! Someone did tell me a running nose is a side effect of one of the pills, but I can't remember which one.
Have a good Sat night.
x

Unity

yellowrock wrote: »

Hi all

I hope someone can reassure me! I am a dental nurse so have done all the things we advise pts who have jaw problems, but mine just isnt going. Have got an appt for local hosp dental dept for investigation but not until Jan 09. I am really struggling at the mo. Does anyone have similar symptoms? my main one is the pain in the jaw, but also for the last 3 weeks on the same side I have been getting a really painful throat/windpipe! It is like a sore throat but without the sore part if that makes sense - a feeling of a lump there and awful pain when I swallow! Hope someone can shed some light!
thanks
yellowrock

I was diagnosed with TMJ last Christmas and got a splint from my dentist to wear at night, which helps a little. I've also had a couple of attacks of trigeminal neuraligia - I don't know if that's associated or not as that's the only painful part for me. I have the very loud clicking noise when talking or eating and I've had to adjust my diet accordingly. I sometimes get my jaw sticking - so I can't open or close my mouth and I look like a ventriloquist's dummy, which can be quite alarming :eek:. I believe there are injections for the pain and they can operate. You should be able to get a leaflet from your local hospital with details on how to cope.

Best of luck!

Unity

Careful_with_that_Axe wrote: »

Now, look, you lot are just being smug now and showing off. "Fibrofog" - I read the instructions to multi quote and in my brain I hear blah, blah, blah!

The 4head thing is like a menthol that makes your skin tingle. I think the idea is that you feel the sensation on the skin and it "confuses" the pain message. You can also get an aromatherapy migraine roll on from health shops. Both are rather expensive (£5 odd), but when you've taken every painkiller known to man and still have a headache, anything is good.
You also can apply these to the v of skin between your thumb and 1st finger, which is supposed to be the pressure point for headaches, and at the back of your neck. One tip - if you put it on your hand, do not then rub your eyes, or you cry for ages!!
I hit the ground running last week in terms of housework, but to keep me out of the way whilst dishwasher being fitted, i went through several year of accumulated paperwork and now the place is a terrible tip and I don't really have the energy or the motivation for it today. Back is playing up a bit along with the usual.
BTW how do you keep the bottom sheet on the bed when you toss and turn at night like we do?
Mine always end up coming off and I don't like sleeping on the bare mattress! I've tried both flat and fitted sheets to no avail.
BZ, I do hope your head is better today. It's just too much to cope with on top of everything else.
ATB to everyone.
x

We have an electric bed with two mattresses which aren't quite single bed sized. I use single fitted sheets and stitch a slightly stretched length of about 2 inch wide elastic from one side to the other at the top and bottom ends of the sheet. When you put them on the bed the elastic keeps them in place very well.

Hope this helps,
Unity

bigzippy

Careful_with_that_Axe wrote: »

Just wandered back in to say that some of my headaches are from identifiable causes. I have a tendency to get dehydrated and this is something that bring on a bonce pain. also, I think as a result of always being in pain, my shoulders are always hunched up round my ears which causes tension in the muscles which contributes to pain in the head.
I do consciously relax the muscles and bring my shoulders down, but it's easy to forget!
p.s. i also have sticky tissues everywhere! Someone did tell me a running nose is a side effect of one of the pills, but I can't remember which one.
Have a good Sat night.
x

I agree with the identifyable causes of headaches - dehydration is one of my big downfalls, but I've now taken to refilling a 1l sports bottle (Buxton or whatever with the spouty top) with cordial once or twice a day so I've always got something with me that doesn't require me to have co-ordination or be sitting up to drink from! It's also less annoying than returning to the kitchen everytime my glass is empty

I do also consciously (sp?) think about how tense my muscles (particularly around the jaws) are and I'm very aware of whether I've been clenching my teeth in my sleep (a by-product of the lucid dreams and associated stress factors I fear).

I don't think the snotty nose is just a side effect cos I've always been like this - I can believe that it might be a bit worse though. I also get a bit worried about how often the blood capillaries break in my nose too lately... Anyone else have this?

bigzippy

Unity wrote: »

We have an electric bed with two mattresses which aren't quite single bed sized. I use single fitted sheets and stitch a slightly stretched length of about 2 inch wide elastic from one side to the other at the top and bottom ends of the sheet. When you put them on the bed the elastic keeps them in place very well.

Hope this helps,
Unity

Now that's a MSE solution if ever I saw one :T

suep

Hi all ,
I cant believe Ive only just found this thread ( thanks to the heads up from Unity ) I was dx with Fibro 12 years ago and had to give up work as a care assistant 7 years ago. I have tried many meds and therapies and never found anything thats helped with the pain more than temporarily.

I couldn't cope without my Tens machine or electric heat pad (argos) and if I have to go out in the day I use the sticky pain relief patches or Tiger balm.

Ive just started my second go at a pain management course, I did one 8 years ago which didnt help much, but Ive been told they have changed alot since then, after my first session yesterday Im dissapointed, it doesnt seem to have changed much so far.
I also go to Hydrotherapy every week although Im thinking of giving it up as it seems to set of my low back pain, it feels like sciatica bit the physio I saw said it's sacroilliac joint pain, Ive tried steriod injections and an epidural, but they havn't worked so Ive been told I have to live with the pain although I struggle to do that at times.

I belong to a few support groups, a couple of local ones and a couple of online ones, and have made good friends on both who have been a big help over the years ( especially Unity )

I am a reiki master and do find it good for relaxing me and helping with sleep, but Im not well enough to practise on others, I couldnt stand up that long :rolleyes:
well thats enough about me, I hope it's ok to join in so late, I have read most of the thread but confess I had to skip some of it.
sue

bigzippy

Welcome Sue :hello:
Of course "it's ok to join in so late"! Lol
I can't believe we're now on the 27th page!!
Well in Unity, for referring her

Unity

bigzippy wrote: »

I agree with the identifyable causes of headaches - dehydration is one of my big downfalls, but I've now taken to refilling a 1l sports bottle (Buxton or whatever with the spouty top) with cordial once or twice a day so I've always got something with me that doesn't require me to have co-ordination or be sitting up to drink from! It's also less annoying than returning to the kitchen everytime my glass is empty

I do also consciously (sp?) think about how tense my muscles (particularly around the jaws) are and I'm very aware of whether I've been clenching my teeth in my sleep (a by-product of the lucid dreams and associated stress factors I fear).

I don't think the snotty nose is just a side effect cos I've always been like this - I can believe that it might be a bit worse though. I also get a bit worried about how often the blood capillaries break in my nose too lately... Anyone else have this?

I think having health problems makes you more aware of things like dehydration, muscle tension etc. as you get used to doing everything you can to help yourself. I am lucky in that I very rarely get a snotty nose these days - but I am convinced it is because I had to give up dairy products because of IBS. One of the reasons they tell you to cut back on milk when you have a cold or chest infection is because milk produces mucus.

I've been out for the day with DH at a conference which included a talk on herbalism and what an eye opener. I will try anything once - so I have come home with valerian and marshmallow and the instructions to make a decoction, starting tomorrow morning. I have to drink it tomorrow night and see if it helps with the vivid dreams.

I'll keep you posted

Have a good night everyone :T

Unity

suep wrote: »

Hi all ,
I cant believe Ive only just found this thread ( thanks to the heads up from Unity ) I was dx with Fibro 12 years ago and had to give up work as a care assistant 7 years ago. I have tried many meds and therapies and never found anything thats helped with the pain more than temporarily.

I couldn't cope without my Tens machine or electric heat pad (argos) and if I have to go out in the day I use the sticky pain relief patches or Tiger balm.

Ive just started my second go at a pain management course, I did one 8 years ago which didnt help much, but Ive been told they have changed alot since then, after my first session yesterday Im dissapointed, it doesnt seem to have changed much so far.
I also go to Hydrotherapy every week although Im thinking of giving it up as it seems to set of my low back pain, it feels like sciatica bit the physio I saw said it's sacroilliac joint pain, Ive tried steriod injections and an epidural, but they havn't worked so Ive been told I have to live with the pain although I struggle to do that at times.

I belong to a few support groups, a couple of local ones and a couple of online ones, and have made good friends on both who have been a big help over the years ( especially Unity )

I am a reiki master and do find it good for relaxing me and helping with sleep, but Im not well enough to practise on others, I couldnt stand up that long :rolleyes:
well thats enough about me, I hope it's ok to join in so late, I have read most of the thread but confess I had to skip some of it.
sue

Hello Suep :wave::wave::wave: - I was reading your post about the pain management programme and thinking to myself "That sounds just like Sue....." A bit slow on the uptake eh :rotfl:. Anyway I am surprised you didn't find this thread before me, but glad I mentioned it - there are some lovely new friends here and some great humour;). It really helps to have a laugh - remember that group we used to be on where you didn't dare have a joke :eek: Jeez, that was deadly.

Love,
Unity

somebody_else

Careful_with_that_Axe wrote: »

S/E, did you let off any fireworks to go along with your fire?! I'm amazed at how relaxed you are about the whole thing. Bet you weren't at the time! Please to hear that you're getting central heating as that will make things a more comfortable temperature for you I hope.

Sorry to drag this up again. Saw it the day (?after) it was posted but wasn't in a fit state to reply at the time.

Right - my central heating has been a long, drawn out saga; starting when the service engineer condemned my last system back in June. I was originally told it would be replaced by the end of July. Come August, when there was no sign of it, I phone TMftC* to ask what had happened. [I actually think he forgot to log the job, but didn't have the bottle to admit it, so started making excuses as to why there had been no action - got to have an asbestos survey (that was done 3 or 4 years ago - suggest you look at your records) got to prioritise systems that have been condemned (that would be mine then), got to prioritise the elderly and disabled (that would be me again then) oh, you didn't mention being disabled - erm... 'scuse me?! Yes I bluddy did, and even if by some strange chance I'd forgotten, you've a) got that recorded on the system, b) been to my house and seen the disabled bay outside it, c) been in my house and seen the adaptations that have been made to the bathroom. None of them clue enough for you?]

Shortly after this I got a call from the supervisor overseeing the works - he comes to the house, has a look around, decides how the job's going to be done, books a provisional date (subject to asbestos survey, 'cos they can't find any record of it being done).

I phone TMFtC again, and ask what's happening about this asbestos survey. Waffle and prevarication follows. Unsatisfactory all round (pity I didn't at this point think to ask him if he'd got around to requesting another survey if they couldn't find the report on the last one).

Two days before provisional start date, get another phone call from works supervisor who's very apologetic but he can't authorise the works starting 'cos there's no current asbestos survey.

More argy bargy ensues - then before we know it, it's the beginning of October and there's no sign of anyone coming round to do this flaming asbestos survey. I'm suffering mightily from the cold, and also only showering once in a while 'cos it's bluddy freezing in my bathroom with no heating. (I had been out and bought a calor gas fire back in August, but it was way too heavy for me to move, so it had to stay put in the sitting room.) Actually, it got to the point I ended up in floods of tears in my surgery - I'd gone in to ask one of the secretaries if my GP would write a letter to the council, to try and chivvy them along a bit. Ended up seeing GP who readily agreed, and duly wrote a letter. In between seeing GP and the letter being written I phoned council again to try to chase things along again, and told TMftC just how bluddy hard I was finding it, and how cold I was and what effect it was having on me. I'll send a 'girl' round on Monday with a couple of electric fires, he say.

Monday comes - phone call from TGftC**. What time would be convenient to drop the fires off. We arrange a time, I have another whinge about the amount of time this whole thing is taking. Fires turn up that evening - with a phone number. No company name (apparently, no-one knows who's doing these surveys), no contact name, just a number. Too late to call that night, but I'm straight on the phone the next day. It did take me 2 days and 4 phone calls but I finally got the survey arranged for 17 October. Gave them a week from that point for the results to reach council (called asbestos survey company to check when the council had received the results, gave it a couple more days to give TMftC to call me. Silence. So I called him instead (and again). More waffle and blather followed, then he said he'd call the works supervisor and let him know the job could now go ahead. [So, under the circs, why hadn't he done it sooner? I've now come to the conclusion that TMftC is bordering on incompetent.]

Works supervisor calls an hour or so later (tenants aren't allowed a direct number for the company that supervises and sub-contracts repairs and upgrades, so we're all dependant on having someone in charge who gives a stuff about us) earliest they can start is 10 November.

And the rest, as they say, is history. Except the saga continues. Since they've completed the job I have been...

Threatened with having the whole system switched off because the condensate pipe was the wrong length for its diameter. Had the whole system shut down and drained the following day in order to replace a faulty radiator valve. Had to call out the emergency engineer 'cos having drained and replenished the system, they forgot to switch the water back on, so left me with no water in any of the hot taps. Had the whole system shut down on me when the pressure in the boiler dropped to the point it could no longer function.

There have been a couple of occasions during this whole sage when I haven't been calm and collected and the epitome of reasonableness (if that's a word) but a plumber setting my house alight wasn't one of them.

____________________
s/e
*The Man from the Council
**The Girl from the Council - only she wasn't. She was a full blown, grown up woman. Not sure she'd have been happy being referred to as a Girl - especially not by TMftC