General Chat

heres a thread for anyone to add or read who needs advice help or just a chat about their symptoms

we have a number of sufferers on here , and all are willing to help with advise, feel free to add

Feel lousy, the weather doesn't help it's cold, wet and windy. Why is it whenever I plan to do lots of work, I end up knackered and not doing anything. I'd go back to bed but my TV isn't set up in the bedroom. ~grumble grumble moan~

Liz
thats me as well can fall asleep at the drop of a hat and headaches are back.

Didnt take any meds last night as had to stay awake to pick up eldest at 11pm and find if I dont take them the dreams are worse than ever and I wake up really frightened.

Not sure if pain down side of face is an infection in mouth where I had the biopsy as lip is really sore as well or just another FM thing.

Am really hacked off at moment and cant see any light at end of tunnel.

Anyone else get sore throat for a few hours or a day then goes away.

Had these for years and never thought anything of it and also get a croaky voice but throat not sore, sound awful at moment and this bout has been going on for over a week now on and off. Oh well means I am quiet for this lot lol.

Not sure if its the Fibro or if I do have Sjorgrens maybe its that will have to see my doctor or wait for consultants appt at end of Nov

Just nudging so I can find it again, what happened to the other FM Thread?

Gillie XX

Gillie

it was whosshed for some reason we are contraversial for having an invisible illness lol

Lol Dawnie, we'll see how long this one will get to.

Gillie XX

Hi Gillie and Dawnie, I feel exhausted today after going out this morning, my energy level is nil at moment.
Dawnie I also have bouts where I have a croaky voice, but after a few hours it goes, no sore throat though.
It's a shame about the other thread, my Rheumatologist says it's a very painful illness that needs to be looked into by more doctors.

Caz xx

Dawnie i have that, thought at first it was a side affect of the codeine, but it persisted even when i wasn't taking it. Started getting a pain in the front of my neck and thought it was my thyroid, doc said it was more likely voice box and has referred me to ENT because of family history worrying me.

Caz, it really is, the sad truth is that there are still docs out their who think it's all in a persons head. I'm lucky to have a good GP but she's no expert and we've done our best together. She referred me to a consultant Rheumatologist who's meant to be one of the best for FM but he says that since I've had it so long it's unlikely to improve/go away. There's not nearly enough research into it. I have my theories about causes but I've only got a degree in physiology not a PhD or so.

same here seems it never goes. no energy want to do things in my head body doesnt.......the cold doesnt help either ... ive had croaky voice for years off and on and it goes in hours.. as im on inhalors they can make you hoarse.. so didnt connect it to fm....

Hi Dawn ...waves to all~~~~~~~~~~~~~~~~~

When I am really tired, my voice sounds like I am on one of those naughty phone line services, been told many times how sexy I sound. Such a shame I wouldn't be able to take it further lol, no blasted energy, but after a rest the voice is back to normal, :>(((

take care all, this weather doesn't help my fm.

Lizxxx

I noticed that Liz, when I am tired my voice is husky and low. The croaky voice is something different.
In regard to doctors not taking fm sufferers seriously, I think I was lucky in seeing a young locum at our practice. I had been before complaining of these awful pains and was told to come back if it got worse, from older doctors. I think it is the older end who don't want to admit they don't know, and if it can't be seen it doesn't exsist. The Rheumatologist I saw was also young, I think it must be something they have introduced to the doctors training since it has been proved not to be in our heads but an actual illness.
I am still having trouble with the morphine dose, this is a new tablet but not dealing with the pain as well, my Macmillan nurse is coming tomorrow to change my prescription to a higher dose. I know she is my cancer nurse but also deals with my pain control for other things, just in case you think I am confused lol.

Caz xx

Hi Caz, hope your Chris helps sort things out for you today. Don't forget to talk to her about what we discussed the other day.

love

Lizxx

well have made yet another appt to see my Dr, hes been on holiday so not back til next week so going next friday, fed up of feeling this bad and know my lot are as well they are treading on eggshells because of my moodiness, but need something to help with the swallowing fed up of gagging on food and being afraid to eat certain foods in case it comes back up and I end up spitting it across the room.
Need my mouth checking as well as have a flappy bit of skin where the biopsy was done looks like a big free moving ulcer.

Where did my normal life go

d x

Dawnie, you saying that just reminded me, my youngest brother had a problem eating a few years ago, kept gagging and worse when he ate, and as he needed to eat out a lot on business dinners etc was embarrassing. I will try and remember what happened, don't think he had any treatment but not sure if it is still with him.
Lizx

well Dr sent letter off for an emergency endoscopy have to ring on Monday to make the appointment.

Also sent me for blood tests checking everything including thyroid as have put on so much weight even though not eating and also my bones as shin bones are killing me.
He wont change my twitchy leg meds until bloods come back so will be back seeing him next week.

wish could turn a switch and have a little break from all this is driving me and my family mad.

d x

Poor you Dawnie, I would love a week of good sleep at night, think it would make all the difference to the way I feel.

xx

Liz

took my evening lot early tonight thinking by the time I got back from friends candle party would be too late to take them and if I took them before i went would be ready to drop into bed when got back.

No such luck just got back and am awake not sleepy at all makes me wonder why I take them.

just a nudge to find out how you all are,

im stiff as a board

i have the croak too, i could earn a fortune apparently lol, because its mow classed as a auto immune illness you will feel lousy most of the time as your white blood cell is raised , trying constantly to fight an invisable illness, i left gr for a while because this illness caused me to the lowest ive ever been, and i had gained 2 stone, i was on 600mg lyrica a dayand a coplete zombie, im off the lyrica and 2 stone lighter but the aches and pain is still there, i just plod on hoping for a cure its hard and i give you all a gentle hug xxxxx