General Chat

I was diagnosed with osteo arthritis in my spine just over 5 yrs ago.
Despite attending pain clinic and taking oxycontin every day since the beginning of 2008, I am experiencing more pain. I have sjogren's which I gather can be connected to fibromyalgia. This causes me to have intolerances to medication.
Several weeks ago, my buttocks, ankles, wrists and shoulders became painful.
I suffer from depression, fatigue, lack of appetite, and despite sleeping pills, I can't get a decent sleep. I get days when I just have to sit down and I can drop off to sleep. I also suffer panic attacks, and just feel no-one understands how I feel. Gp's are always too willing to right a repeat script out, but I feel it's just to get rid of me. I had to go to the surgery last wk, and that's the first time in almost a year, so I'm not there every wk bothering them. I'm in so much pain I just don't know what to do next. :-(

I know very little about what you are experiencing, but you have my deepest sympathy and I feel sure you will get some helpful and encouraging replies.

I do remember once reading through some magazines designed for people with various types of joint pain. Mostly they were adverts for expensive beds and the like, but there were some brilliant articles that were informative and interesting.

And I would like to know how Prince Philip is walking so well now and yet I am sure 20 years ago he seemed to be hobbling around in some pain and discomfort. Royal jelly was mentioned as helping him:-S

I'm so sorry you are feeling this way. I can't suggest anything because I don't know the medical setup in the UK. Maybe you should scream long and loud - it's the squeaky gate that gets the oil.

You know I'll be thinking of you <3

Morning TLL.

I have the same problems .. so know the pain you are suffering.. i rest when its really bad .. ive been to pain clinic to ..no help there .. also like you have reactions to lots of meds.. hope you can get relief ..like sue says start shouting..

jgee..

Thanks John Sue n jgee. Just feel I'm knocking my head off a brick wall :((

Take one day at a time.. if to bad ..leave the HW till you feel better ..flutters dust and other small tasks can wait..its the only way i cope .. i find pain easier if warm ..

jgee..

Hi LL.

My daughter has fibromyalgia as well as Asperger's and she has days where she suffers as you do.

Are you on FB? There's quite a good support network on there where it helps to talk things through with others and realise that you aren't alone. It may be worth googling to see if there are any support groups in your area too.

Hope things ease up soon. Cx

Hi Cynthia. Yeah I'm on fb but not seen the support network on it
Jgee HW isn't something is something I worry abt tbh. I have heat pads I find invaluable. Xx

Did not have the personal experience or facts that Cynthia and jgee have. So have read up a bit about it on Wiki this morning. It does say about heat and sleep relaxing muscles.

Just a thought. With warm weather and sunshine on horizon (we hope - nice and sunny but not too warm in S Wales this morning) can you sit out for an hour somewhere secluded and have a snooze. Even a few minutes might relieve pain a bit, LL :-).

my o/h suffers from the same as you tablets dont seem to help the hospital is going trial her on a tens machine hopefully this will help.

Michael2 I have a tens machine I was given by the hospital which worked for a while. John I can't suffer hot weather as it makes me ill so sitting out in it even in the shade is a no go. Michael2 hope your oh benefits from the tens machine

I have fibro and have bad days....I got to bed really tired but im still awake 2 hrs later....The pain can be unbearable some days....Ask your gp if you can see a rheumatologist as they can do a trigger point test...They can also let you know what meds may help....

Jules x

Thanks Jules. Think I'll do as you suggest. Yeah I'm the same. Ito away to bed really tired but can't get off to sleep.

I was diagnosed last May so still quite new to me...I'm already disabled through a back injury and degenerative discs in spine plus a few other health issues and too have this on top sometimes really gets me down...I have awful weekness in my arms and sometimes I can't even hold a cup of coffee!! I find heat pads or a hot water bottle helps the pain...Do you find that you are sensitive to light and noise?? This is part of Fibro to...There are so many symptoms

Jules x

I can be sensitive to light sometimes, and things like a car door being closed seems to be magnified. My flushes had stopped but are now really quite bad. I've started getting panic attacks again, and can't stand or sit for very long


LL x

I have no experience of your pain so I can't make any suggestions, other than keep pestering your doctor, but I just wanted to send my sympathy to you and the others on this thread who are suffering such pain. Make the most of the support groups and chat boards like this one and hopefully you will feel a bit less alone. I hope you start to feel better very soon.

Hi Vicky,

you know I have had fm and chronic fatigue syndrome for a long time, I just have to do what I can when I can but am lucky that the sunshine helps me, hence looking forward to my holiday in Crete at the end of the month.

Do push for an appointment to see if you do have fm. At least you will know what you are up against and can then ask for help with the pain.

It's the fatigue that gets me most, I fall asleep in front of the tv and even then can sleep for ten hours or more altho it's always broken by noise or something. I wake every few hours, and haven't had a sleep for years which I wake from feeling refreshed, if that makes sense. Fm means you often don't get the right kind of sleep.

Take care

Lizx

The right kind of sleep is so important. I have none of these conditions but it seems months since I have woken up feeling refreshed.

Winters are getting me down a lot now - and I dream of days like yesterday when sun was out and bright almost all day on the coast in S Wales. Not too bad today either so far.

We do get embarrassed if it is 3pm in the afternoon and we are chatting to the vicar over a cup of tea and drop off into a deep sleep. But perhaps we shouldn't. We are not so young, our grans used to do it, so why not us. He can let himself out :-D :-D

Hi LL

Can you change doctor?

I've seen docs & specialists, and they can't decide if I have fibromialga or lupus! I keep telling my mother had fm.

I'm starting to believe both conditions are names the doctors have made up when they don't know what's wrong with us! I've been given paperwork with hundreds of symptoms, I might have 3% of them. Big umbrella.

None of the medications they've given me have helped at all.

I got a special pillow from the physiotherapist, that helps a bit, but I still wake up most nights with pain in my neck.