Fibromyalgia

suep

I had a bad day yesterday and didnt get online at all so Im still trying to catch up, but just wanted to say before I forget congratulations to Sharon, Im so pleased for you.
sue

pamaris

Hello, just wanted to introduce myself. I am a 32 year old mum of 2- age 7 and 4.
My mum has fibro, as does my grandma. I have had severe headaches and insomnia all my life but over the past 12 months it has become very clear I am a fibromite. I finally saw the rheumatologist yesterday.

This intro could be long, as there is so much that has changed in my life over the past few years. I'll try not to get into every detail.

The doc said yes I do have fibro- but I also have joint hypermobility (double-jointedness)... which I already knew, but thought it was just good for party tricks. Anyway he said that over the years I have naturally used the extra few centimetres of movement to my advantage, and while my joints can deal with it, everything connected to my joints can't, so I have complications.

He referred me to a fibro clinic/ specialist nurse (yay I'm glad this resource is available) and to physiotherapy and put my on Pregabalin. Haven't started the pills yet- slightly worried about becoming a zombie (this is how my mom reacted to it).

Like all of you, I have a few big challenges related to all this-

1) Pain management: I haven't been able to get my GP to prescribe anything for pain (that's right, nothing), and the rheumatologist also suggested I stick with what I'm currently doing that isn't working. I take Solpadeine Max tablets (strongest OTC co-codamol), but they only half work half the time. Ibuprofen doesn't do jack. I don't know what else to do for the pain. I understand why the docs are cautious about pain meds but aren't they appropriate for people with chronic pain? When you are denied pain medicine you end up feeling like an addict or a criminal of some sort.

2) DLA- This is something I intend to tackle in the next few months after I start my treatment and get to know my healthcare providers a little better. I am hoping I'll be able to get the fibromyalgia specialist nurse to vouch for me.

3) Walking- My double-edged sword is that I look very well (thanks to Revlon anyway) and I walk a lot so I appear very healthy. However the walking is completely out of necessity and it is now causing me a lot of pain and exhaustion. I am American, and I don't have a UK driving license. Over a year ago I had to cancel driving lessons because of all the headaches- plus I was having concentration problems/ fog while driving. I have made no progress since. So... I must walk 5 miles a day doing the school runs. Thankfully this will reduce to 3 miles a day next September. The exhaustion from walking renders me completely useless during the day.

Despite all this, I do like my life; I am generally happy and I feel blessed to have a supportive husband and nice children (most of the time).

Anyway, I just wanted to say hello. So... hello!

natashasprite

pamaris wrote: »

Over a year ago I had to cancel driving lessons because of all the headaches- plus I was having concentration problems/ fog while driving. I have made no progress since. So... I must walk 5 miles a day doing the school runs. Thankfully this will reduce to 3 miles a day next September. The exhaustion from walking renders me completely useless during the day.

Same here I really couldnt concentrate and although I got really far in my lessons and it was only the bunch of liars evaluating me that would not let me pass I am not sure if I would be a great driver as I cloud over too easily. This is one thing the Plaquenil has not helped with .But at least I am in less pain and so able to handle walking as much as I do more.

I had terrible reaction to plaquinil for first few months but it semms to be calming down ... its only certain soaps that sets it off

Careful_with_that_Axe

Welcome pamaris
It's absolutely criminal that you haven't been prescribed any pain meds! Is there another GP in the practice that you can see to talk about this? Did Rheumy not comment on this? Absolutely shocking.
For the meantime, paracetamol seems to be a little more effective than Ibuprofen but, unfortunately, will give you nowhere near the level of pain relief you need. Maybe you need to tell them that you are at risk of overdosing trying to take the pain away with OTC meds?
Hugs to you.
BZ, hugs to you sweetie. We're all sending you lots of positive thoughts, hugs and will all do anythiing we can to help and support you.
Hugs also to all those who are suffering from flare ups at the moment .

P.s. BZ, we used to have a saying for my ex MIL. She came. She criticised. She left.

Funny, we get on like a house on fire now and she's my surrogate Mum!
Love to all.
x

Careful_with_that_Axe

p.p.s. pamaris, soluble painkillers seem more effective that those in tablet form.
p.p.p.s. Unity, I was born in Bishop Auckland. Family all come from Manchester area and are of Irish descent.

[Deleted User]

hi there Pamairs

I'm new to this thread too, good to see your post. The family link is very strong in my family too like you it's mostly the women in my family (mum, aunt, grandma, cousin etc). I have also been diagnosed with Hypermobility too - feels like a bad joke 'cos I can hardly move my jionts v well most of the time.

You should be able to get DLA esp the mobilty component. It makes a great deal of help esp with paying for the heating bills. The form is a bit daunting but take your time and I'm sure you'll be successful. PM me if you need any help with it. I was lucky enough to have my DLA awarded for an 'indefinite period' :T

I have been taking Pregablin for about 6 months. Initally it was very difficult, I did feel dizzy and confused for a week or so. But it has made a big difference to the pain and surprisingly to the depression it has also helped my sleep (but I also take diazepam anf amytriptiline at night which helps 90% of the time)

Re the driving / walking: the pregablin & amitrytiline combination gradually eased my foogy head feeling because it helps me to sleep. Now I only have it a coulpe of times a week as oppposed to 100% of the time .I was then able to get a car via the Motability scheme. perhaps when your fogginess eases this might be an option for the school run? just a thought.

The best thing is having loving and understanding family & friends. And being able to have as many duvet days as poss' lol

Hope you have a nice warm day without too much pain and fatigue....

BB

pamaris

Careful_with_that_Axe wrote: »

p.p.s. pamaris, soluble painkillers seem more effective that those in tablet form.

Thanks, I had no idea- so I guess I should try those nasty effervescent tablets?

pamaris

Thanks for the support bushbaby.

I just can't take amitrypt. I have thankfully found a remedy for my insomnia, but it is controversial so I won't get into the details.

I am not sure what Motability is, but I'll look into it.

After hours and hours of research I feel confident enough that I'll be able to fill out the DLA form properly. I want to see if one of my healthcare providers will vouch for me in a letter. So that will be another 1-2 months. Anyway I am sure I'll take you up on your offer & PM you, since we have similar symptoms. I may have some questions when I start filling the form. The form is very definitely not written with any consideration for people with hidden or unconventional disabilities.

You mentioned the heating bills- it would be nice to turn the heating to a comfortable level. I am terrified of what the bill is going to be in January.

I have found it really frustrating trying to get people to understand what is going on with me. I mean, how often do you hear someone say they're "tired". When we say to someone that we're "tired" they just don't get what we mean by it. Is there a word in the English language that adequately describes the exhaustion, fog and pain that we deal with?

Careful_with_that_Axe

pamaris, if you encounter any difficulty with the DLA form (I've given up and am seeking help with mine) there are many avenues of help available at no cost, so don't struggle unneccesarily. It can take its toll on your mental state having to concentrate on the bad side of things.
Good luck and hugs.
I'm feeling huggy today.

bigzippy

Thanks everyone. I might be feeling slightly better today...I suppose :rolleyes:

I think it's stress getting the better of me tbh. My landlord dropped a letter round last night saying my lease is up 31st January and they won't be renewing it. Because he thought that I had til 5th March he's said that he'll agree to extend it for one month to 28th February. The personal circumstances surrounding this decision, I think, are dodgy and it frustrates the hell out of me (my landlord/lady are a "friend's" parents...who I've recently had some spats with:rolleyes:). I'm freaking out, big time, about the prospect of packing everything up and moving house. Plus I know the type of bungalow I want/need will cost another £200 a month in rent - which really we don't have.:o

Add to that the stupid ridiculous bluddy-minded CBT woman yesterday and I'm a little ball of stress.

Welcome to Pamaris :wave: and again to BushBaby and NatashaSprite (I think you drop in and out randomly, if I'm right..? )

Very happy for you Sharon :j I'm sure you are too! :T