General Chat

Dawn and Jules,

Thanks for your messages. Dawn you are having an awful summer over there, a bit like the one we just had, although I can't handle the heat any more. Hope the good weather will soon return as you had a couple of warm weeks there earlier.

My eyes have been blood red and gritty. I had to get the steroid drops made up as the eye gel wasn't doing a thing. I don't like using them, but sometimes there is no choice. Sorry you are in such terrible pain. I have found my body gets used to pain relief and then stops working completely. Not sleeping either, now chronic insomniac, but this current pain won't even let me turn over in bed. Ahhhhhhhhh. I've been tested for Lupus in the past and came back negative, but it might be time to revisit those tests. Struggling to get food down too so know how you are feeling.

Jules you are not doing so good either. It all sucks!!! The GP's here are no better. They are not trained to treat these chronic illnesses, especially when so many in the population are now affected. Then you get referred for counselling, that really gets my goat up. :-| They still don't get it is physical and not psychological. Good luck with the new GP, hopefully she will be a help to you and not dismiss serious health problems. We all need someone just to listen and display a duty of care.

Take care girls, Kim x

I have been struggling for the last couple of days...I have been asleep most of today and my arms are so weak they feel like lead weights...
Im feeling really low aswell, have been for nearly 2 weeks..I went to see a gp the other day and told him how I was feeling..I asked if I could see an adult social worker but all he could suggest was that i went to citizens advice!!! I was so upset when left there...He knows what I went through last year and I asked him for help but thats all he could say...
I went to see the nurse on Monday for blood pressure check and it was high again, I told her what the gp had said and she couldn't believe it...I now have an appointment to see another gp on Friday, She is a really nice one as I have seen her before...

Jules x

Kim
I seem to be worse lately had another Lidocaine infusion on thursday and whereas last year it was almost instant releif for a few weeks this time I am still in agony and am doubled up with pain from kidneys and it seems to of affected my windpipe so having more trouble than normal swallowing .

My eyes today are really pricking and dry which is the sjogrens.

Really is hard to tell what is the sjogrens and what is the fibro . I really should get tested for lupus as well as have so many of those symptons but with the thought of another 3 hospital appointments this week all for different things dont think I can be face having another visit to drs and blood tests as well.


Sure the rain and cold isnt helping so much for summer here.

d x

Is anyone having a serious flare up of their conditions atm. I've woken up with swollen fingers and wrists and serious pain from head to toe. Never happened before just usual all over ache. Would it be the fibro or the Sjogren's. Bowels not working either, not to get too personal. Can anyone help? Hope you are all as good as you can be.

Cheers, Kim.

Hi Ann specky has said the same i am feeling really tired so he is going to thread them for me as it is easier with just red white and blue, thaykyou Ann xxx :-D

Lorraine, do you think you are overdoing things making so many bracelets? Do you really need so many?

hello LIZ HOPE YOUR FEELING OK TODAY , we will get to meet

MEgirl jules and everyone on this thread does not mind you talking about your symptoms we are just not allowed to mention medications which is fare enough, i kept forgetting and doing so i had a a email telling me not to from genes, i think there is so many to list some times

did you feel you went to the doctors complaining of these symptoms they would send you off with a different diagnosis every time

but now every time you go you get told you have more.


im wondering now ive been developed with sleep apnea, is that makinging my fibro worse, as like of quality sleep, need to mention when i go to pick it up , also double vision is annoying

thanks for the email jules, how are you today, im just going for my tea

im having mussels in wine sauce, then lots of fruit need some energy i have to make another 24 jubilee bracelets before sun

Dawnie, me too, never get more than a few hours sleep before I am disturbed or wake in pain, and the dreams, so weird and vivid as you say.

I haven't been to the dentist for ages, had to cancel when I had that bad fall and couldn't put the back of my head on the chair back, then cancelled again when I had a coldsore across my lip, and haven't got round to making another appointment, must be 2 years or more and I know I need fillings or work on three teeth on one side, upper ones. My gums have been receding for years so am looking very long in the tooth these days but hope I can hang on to the teeth I have, must make an apptmt soon but will get a telling off I expect.

Have put a comment on your thread about the kidney stones, Dawn.



Lizxx

Hi Ladies

Liz so many the same symptons as Fibro just make sure go to dentist regularly mine sees me every 3 months.



Well had another trip to drs yesterday as in agony still infection still there slightly but not enough to give me this much pain (am doubled over) so now waiting for appt for a scan on kidneys and uterus oh something else to look forward to.

Cant beleive how when you have one thing everything else seems to hit you as well.

Would love a whole nights sleep without any weird and vivid dreams as well.

d xx

Yes that's why it comes under Rheumotology, plus I have had Ross River Fever and Glandular Fever - get flares up of pain from those plus the fibro and Sjogren's. Really awful when it all hits at once. I have a huge list, but I won't share with you. Am sure you won't want any more S**T.

LOL cheers Kim x

I find I am even more fatigued than ever, have been like it for weeks now so I googled Sjorgrens and found it can cause pain and fatigue just like fm.

Like I really need another ailment to add to the list!


Lizx

saliva, sorry for my typos

Dawn those sailva pastiles are no longer available over in Oz. Lot of people swore by them, but gone finitto just when I needed them. Will have to drink more tea, although I tend to gag on it so just drink filtered water.

Good luck at the gp's and hope you can get some relief. My mouthguard is over my top teeth, seems to stay in although took me a while to get used to it. It has changed shape and has bits missing from it. I must be really chomping away in my sleep, lol.

Kim xx

well looks like back to gps in morning cos am still in pain antibiotics not doing a lot warm tea which is what helps me a lot is being drunk by the bucketful.

MEgirl I couldnt get on with the toothpaste makes me gag dont know why and too much hastle getting the saliva pastilles from drs so just drink loads

Jules my mouthguard is never in in the morning and its a lower one so gawd knows how it ends up all over the place, dead romantic as well arent they.


d x

Dawn thanks for filling me in. I will know at least what not to say.

Yes I wear a mouth guard or splint to for the teeth grinding, but the damage is already done from the Sjogren's. Have not been to the dentist since 2008, naughty I know. I have adrenal insufficiency so anything will send me into shock and possible coma. Grrrrrrrrrrr. I just chew the gum and a special liquid of the same brand. Use the dry mouth toothpaste and mouth rinse as well. Winter is a killer, my saliva is barely there now. :-( Will have to get to my dentist soon or my teeth will all be gone.

The fibro has been terrible, big knots up the side of my neck, but has eased a little.

Dawn drink as much pure Cranberry juice as you can for the UTIs or the tabs. will not hurt you. Don't bother with the juice containing sugar, barely any fruit content. My doc said my insides are so dry, even intestines. So uncomfortable. Sjogren's will most likely be the cause as I get them too. A very dry argument. My eyes are hurting so badly and blood red, vision blurry. Not much fun.

Thinking of you all xxx

The rheumatologist reckons mine started because of what I went through last year!!
My mouthguard ends up on the floor most nights...Not sure if I take it out in my sleep or it just falls out...Found it over by the door one morning :-S
I know I have been sleepwalking again, something I haven't done in a while as I found the ironing board in the lounge yesterday morning..Bearing in mind I keep it in the cupboard in the hallway!!!

Jules x

I think some people 'police' any thread that seems to refer to medical matters, regardless of if they suffer the same, used to be just we fm sufferers who posted on the original thread that Julie? set up.

I do the tooth clenching/grinding but as you know Jules, I couldn't get on with my mouthguard the dentist made me.

Take care with the squash etc folks as many have aspartame in especially those that say sugar free or low sugar etc and I am sure that's what kicked off my fm, I drank litres of flavoured fizzy water when I had kidney stones as I hate the taste of tap or plain water but it was soon after that the fm started.

Lizx

Jules I have a night guard as well through clenching and grinding. If you get diagnosed with dry mouth or sjogrens they advise dentist every three months as more prone to decay as no saliva to wash it away

I drink lots as it is, always on the loo :-D...I can't wear contacts as I have the wrong shaped eyeballs :-S.....I wear a night shield on my bottom teeth at night as I clench and grind them...Have made them very sensitive..

Jules x

Hayley was way too quiet on here lol Joy saw your comment nowt wrong with it didnt see other ones see thats what you get for going to sleep during the day miss it all. xxx