New to Fibromyalgia

Is anybody there?

Just having a coffee wondering if anyone else is wondering if anyone is here.

Morning, how are you today?

Hi I am here but not for long. I soo agree about making sure you are diagnosed by a rheumatologist who has experience of fibro and not just a GP. In my online group we have learned much from American members and realised the medical profession here are way behind. I was diagnosed many years ago, but also re- diagnosed by a rheumatologist who specialised in fibro. Sadly he has now retired! My initial appointment with him lasted a long time as he asked all sorts of things from way back and he also ruled out other things which can be causing pain. Fibro should not be giving folks permanent pain but felt on use of muscles etc for example repetitive movements like walking, cleaning windows etc etc. it is down to our pain receptors and not a fault within the joint as arthritis is. I take pain killers before bed mainly for back and hip and amitriptylene to help with sleep as we do not get restorative sleep which makes use of muscles more painfull for us than others. If anyone wants to join our self help group please let me know

I am going off now as it is difficult on tiny pad on my phone but will be back on pc later

Val

Emis Moderator comment: I removed the email address as we do not publish them. There is the private messaging service if users want to contact each other directly.

Good morning 2357 and fellow sufferers

Not feeling brill but sun shining here making like pleasant. Just about to feed my new fish, I think they know cus they are getting rather excited, very much like me when I know I'm having pie and chips for tea.

How is everyone else this morning. Hope the sun is shining where you are.

Looking forward to coversations

I did put in a longish post a few minutes ago but apparently it has to be approved because I put my email address in so will have to wait for that !

Hope everyone is well. It is chilly here after torrential rain all night long!

Val

Hi Hecate. Just read your message about a support group you have set up, I would like to know more please. I also noted that you hated to be known as a sufferer and I well understand why. Hope I didn't insult you or anyone else by saying hello to my fellow sufferers but nothing else came to mind.

Dont want to upset people, I've only just joined.

x

Hi Twiglet I think I messaged you, but not sure if it went through so I will message you again so see if you get it ...

To the moderators here - I do understand about not disclosing email adresses and completely missed the message option - sorry

Val

Hi Mrs SAS ... who were you diagnosed by ?? see my previous post - you do need this sorting by a rheumatologist who will go throough lots of things for you and discount stuff which doesn't apply to fibro ... fibro is with us always, but we can have good days and 'worse' days ! It is not life threatening and does not mean there is anything wrong in our joints etc as arthritis does - just our pain receptors not quite the same as others ... sleep , especially none refreshing sleep is a big thing in fibro unfortunately and I am sure others here will agree that in the mornings we usually feel more tired than when we went to bed ! along with others I take amitriptylene which is supposed to help with sleep probs, but I haven't had a decent night's sleep for years - must be wondeful to wake in the morning and feel refreshed and ready to start the day ....

You need to be prepared to take control of this condition and try and remain positive .... I married, had children and worked all y life - there was no other option, and having dealt with this problem for many years I now know the things I have to take steadily or be prepared for ... unfortunately I also have spinal stenosis and arthritis in neck and hips .. so I do take pain killers before bed but just for those problems

Val

I just wondered if anyone here has tried any form of alternative therapies ... acupuncture, massage etc ??

I am a qualified Reiki master/teacher but never had anyone come to me who has fibro (anyone here who lives close can come for free !)I can't have massage as that actually does hurt me, except scalp massage which is great ! Haven't tried aromatherapy but would think that would at least make me relaxed .. I have had acupuncture for neck and shoulder treatments at our local hospital which worked wonders for me ... ....it was just a thought ...

Val

Hi Val, thanks for the message. Will certainly be getting intouch soon. Been quite busy today, I've stopped smoking by using an electronic cig and up to now seems to be working. Tis good to achieve something even though its only a little thing, seems to compensate some how for all the pain.

Morning to all.

Just ought to say, my name is Debbie.

I so agree that when you wake up, you feel exhausted, as if you havn't slept at all.

I have to have loads of cups of tea, before I feel 'awake'!!

Well done, Twiglet, for giving up smoking. I wish I could..... But I enjoy it, for now.......

I was wondering, Twiglet, if you have applied for DLA???

I agree that I couldn't have a massage. Couldn't bare to be touched!

I havn't tried any alternative therapys.

Do any of you have IBS??

My stomach is always really swollen and painful.

I look 9 months pregnant, most of the time!

Not likely, as I'm 55!! It's so frustrating.......

I also have slipped discs in my lower back and I have to take Morphine for that.

Also, I have Bipolar. On high doses of medication for that. TMJ. Arthritis in my right knee.

I am registered Disabled. And I have carers who come in every day.

They are my life line. And the only people I see.

Does anyone else get migraines? I get them quite a lot. But have a good medication for them.

I'm in East sussex and it's raining at the moment.

Hi Debbie .... chilly frosty morning here in my part of the North East !

Having fibro does not mean you will get DLA .... however, the 'extras' you also have should qualify you for some part .... but it is extremely difficult to get DLA now ....

I don't have IBS but do have irritable bladder .... also had migraines since young .... but have to say as I have got older they are getting less and less (touch wood !)

Val

Hi Val,

Nice to hear from you.

I already get DLA.

A lot of people with Fibro do get DLA. so, it's worth a try to put a claim in.

It depends what you put on the form. There is advice on what to write. They usually say no, to start with. so you have to appeal.

If you have to give up work, then it will really help.

I take sumatriptan for my migraines. At the first sign. and it really helps.

I used to suffer with my bladder. I got cystitis every couple of weeks, it was agony. I went into hospital and they took pictures of my bladder. It was, red raw, with lots of scarring.

I had a 6 month course of low dose, antibiotics. and since then, I've been ok.

I do drink at least 2litres of water a day. which is very important.

I am now very interested in natural remedies. Which I use on myself and my animals.

(I have 3 Shihtzus and 4 ginger cats).

I'm not very impressed with vets!!

There is a brilliant website I use. but i don't know if i'm allowed to put it on here?

Regards, Debs x

Hi all.

I'm going to put the website i use on here. If i'm allowed to.

www.earthclinic.com

Debs