Fibromyalgia/sweats

[diamondwendie]

Well what can I say....... Received letter from rheumatologist today confirming I have fibromyalgia. Not gonna say how I'm feeling about it as I really don't want to swear. Not happy.

[Malwimmy27]

It was a real double edged sword for me when I was diagnosed. Good to know what I was dealing with but the realisation of what I actually had was a shock!

[Redhots7 in reply to Malwimmy27]

I was relieved to finally have an answer !

[Hidden]

Yes it is a shock It took 7 years for me to get find out I had it --- as in the first place they got it wrong and I was on the wrong medication too I was lucky that two of the members on the foram advised me correctly Thete are plenty of members on this foram that will help you Were all in the same boat

[TheAuthor]

I am so genuinely sorry to read that you also have Fibro, and I sincerely hope that you can be prescribed good quality pain medication that works really well for you. It may be beneficial to discuss a referral to a Pain Management Clinic with your GP or medical specialist? I want to sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

[diamondwendie in reply to TheAuthor]

Thank you ken. Well at the moment I'm in rehabilitation for my open heart surgery which will be a couple of months and the nurses are really supportive. my next step is neurologist then dermatologist hopefully together they can help fix my broken body lol x

[TheAuthor in reply to diamondwendie]

Good luck x

[Mary6371]

Hello Diamond Wendie. My name is Mary. I know what you mean about the fibromyalgia. Last two days I have been in a lot of pain. My doctor is trying to fine the right meds for me. I cannot take lyrica because I am allergic to it. I always say this why us good people have to get the fibromyalgia. I am the only one in my family have it. Good luck with yours. Take care and God bless you.

Mary

[diamondwendie in reply to Mary6371]

Thank you Mary you too hun hope you find the medication for you. X

[Stephrm44 in reply to Mary6371]

Perhaps we get it because we are the only ones strong enough to cope with it; takes a pretty special person to endure what we do.

[maggi999 in reply to Stephrm44]

Steph,

You've just made me cry - but in a good way.

I'm newly diagnosed and I'm trying to get my head round this horrible condition. When I think about the pain I've been in over the past 7 or 8 years, and I've kept going, working full-time in a demanding job, looking after my poorly husband, caring for my disabled mother (she passed away last October, when does my heart stop aching?) and elderly in-laws - how did I do it?

I'm humbled by what you have written and I love this site because everyone on it really 'gets it' and understands what we are going through - thanks everybody xxx

[Redhots7 in reply to maggi999]

It is hard when you are so active to slow down but you must pace yourself !

[maggi999 in reply to Redhots7]

Your are so right Hothead. I completely crashed in January and have been off work ever since. I finished my 'Energy for life' course on Thursday and went away with friends for a long weekend on Friday.

I was dreading it. I thought that I would end up over-stretching myself and would crash out and just generally be weak and weedy.

After learning about 'pacing' and 'graded activity' on the course, I followed the advice and I've had a brill weekend - lots good food, more drink than I usually allow myself (champagne is sooo drinkable), plenty of activities and sight-seeing. Of course I had to prioritise a relaxation session in the hot-tub to recuperate each evening -ahhh, bliss!!

It gives me hope that I can have a 'life after diagnosis' - not necessarily the same life but at least something!

[Redhots7 in reply to Mary6371]

There are lots of other meds to try, may take some time but keep trying. The right pain and sleep med. is crucial !

[Hidden]

Hi diamondwendy,

We will be right here for you every step of the way.

Take care xxxxxxx

[diamondwendie in reply to Hidden]

Thank you sooo much x

[diamondwendie in reply to Hidden]

Thank you. Hugs

[rosewine]

So sorry that you have had your worst fears confirmed. If you haven;t already done so go to the mother site FibroAction and gen up on all the information as it gives you a base to work from. If your GP seems a bit at sea see if as Ken saysto try and get a referral to a Pain specialist as in some parts of the country there is quite a waiting list so in someways the sooner you do it the better.

Chin up you can always come on here for support as people are marvellous.x

[diamondwendie in reply to rosewine]

Thank you for your advise x

[Vicster52]

Hi, I was the opposite, I was glad of a diagnosis.l had suffered for 3 years not knowing what was wrong with me. I had been to doctors over and over again. I asked to see a specialist, was sent to see a Rheumatologist, and was diagnosed straight away, at last an answer to all the suffering I had experienced. I knew then I wasn't going mad after all, they kept making me feel that way. I even paid to see a Chiropractor, I had deep muscle massages, it was excruciating to say the least and on the 4th visit, she said "if you don't get any relief from this visit, stop coming your just wasteing your money". Xx

[Redhots7 in reply to Vicster52]

Ohhhhh, I love deep massage . Makes muscles let go !

[sandstone]

Hi i think having a diagnosis helped me, I was always made to feel like a hypochondriac, think even my family was beginning to ignore me when I said I was ill and when I couldn't manage to go to family days or nights I felt that I wasn't believed, it's hard then the most as who do you have to support you then.

It took 5 years for my diagnosis and i felt like shouting and screaming at a lot of people who doubted me.if only to have the energy.

Medication is hard for me too as i have other ailments and having asthma means no anti inflammatories wish i had taken my umbrella when it poured on me....good luck to everyone hoping we can all manage to get the best help possible and make pharmaceutical scientists realise any drug around at present is not enough Get working, so that we can all manage to climb out of bed daily and lead the life we miss.

[Redhots7 in reply to sandstone]

Usually not one drug that will help , going to be a combination . That is hard part .

[Hartleyhare2]

I remember when the consultant confirmed I had Fibromyaglia in one paragraph to my GP and him saying I must be pleased. My open mouthed fish eyed expression obviously told him I was not. Four years of tests, gruelling pain for you to tell me something I have worked out myself years ago,, that there is no cure for and no set treatment or procedure for um, yes great thanks. I know we can treat the symptoms and know a name for it. But many health specialists don't even believe in it, it's all in your head, to get painkillers gets the roll of the eyeballs here we go drug seeker ie anyone who wants more than paracetamol and is in screaming agony. I'm going to the pain clinic but not sure what will happen there. I can't believe that it is so widespread there are no Fibro clinics anywhere or specialist hospital departments. Very sorry about the negative rant 46 feeling 86 and had hoped to celebrate the solstice. At least I have all you guys on here.

Sorry Wendie you have a lot on your plate to deal with my love.

Keep smiling and laughing though not too load because they lock you up for that too!

Bright Blessings

Patrick xxx

[Redhots7]

I have cried myself to sleep many nights with the pain . Keep working with your doc, the right meds will help . Pacing yourself and SLEEP is extremely important and the only way I get is with Temasapan. If you have always been very active, that will be the hard part because you will have to slow down , other times you will have to push thru . Not an easy syndromto have but you can do it !

[Redhots7]

But you have an answer, now research , info all over the web . Meds will definitely help , may take a while to figure out what works for you.

Keep working with your doc to find right one . Learn to pace yourself , that is the hardest .

[Redhots7]

Check out the web for info, learn what it is, print out articles of symptoms and put on bulletin board for family to read .. Work with your doc to get right pain and sleep meds .

It is complicated syndrome , need to be reminded when your having bad day , what it is and rest .

[Redhots7]

I AGREE

[Manu2015]

Hello diamondwendie I'm sorry to hear that I've had fibro nw for 5 years it don't get any easier I have my gd and bad days if u need any advice with fibro I will try and help u