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Fibromyalgia Action UK

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spam251063 profile image
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Hi I have just come back from the Rheumatology department today with a diagnosis of Fibromyalgia. For a while now I have had pain in the whole of my body as if my skeleton was aching. I also get pins and needles in my hands and feet and sometimes I can barely walk as if I am walking through treacle in slow motion. I must admit to feeling scared of this so any advice would be greatly appreciated. It would be good to have people who understand as I thought I was imagining these symptoms.

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spam251063
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15 Replies
Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

hiya :)

Welcome to the FMAUK Community !

I am sure you'll find this community a helpful and supportive place to be ! There's lots of posts to read and many lovely members to talk to about Fibro.

You may wish to check out the main FMA UK website which has a wealth of information about Fibromyalgia which may be of help to you - fmauk.org

You can order a patient information pack, including our patient booklet at fmauk.org/resources

As a newbie, please can I mention that members prefer to answer posts that are locked to this community only. If you wish to do this, here's a link that explains how to do it;

healthunlocked.com/fibromya...

getting your diagnosis can be a time of mixed feelings- you are relieved at finally having a *name* for everything - but its also a time when you have many questions, and like you say - scared because you do not know what the future holds - and you are definitely not imagining it :)

Dinkie profile image
Dinkie

Hi Spam

Welcome to the group nobody wants to be in. Seriously though we are a happy little band of folk. It takes time for the diagnosis to sink in. What I would say is that you are exactly the same person you were before the label was attached. Fibro symptoms are different for all of us so what works for one person may not necessarily work for another. It's a case of trial and error to see what works for you. Some of us, like myself, cannot tolerate prescription medications. So what works for me - well firstly absolutely no processed foods or refined sugars. I ignore this at my peril as should I stay from the straight and narrow IBS will strike immediately. Microwaveable wheat bags, hot water bottles, bio freeze gel are all my friends! I have regular (as and when I can afford) chiropractor and hypnotherapy treatments. Hypnotherapy helps with relaxation and insomnia and the chiropractor firstly for the osteoarthritis and secondly for the muscle massages. Epsom salt baths help with the muscle aches and pains. Biggest piece of advice - learn to pace yourself and say no if by saying yes you are going to be left exhausted and unable to function for days.

Never feel any question is too silly to ask - we have all been newbies and are here to listen to the rants and raves, share the joy when something lovely happens, and offer our experiences and advice if asked.

Once again welcome and I hope you find the folk on here as friendly and helpful as I have.

spam251063 profile image
spam251063 in reply toDinkie

Hi Thank you so much for such a speedy response. The funny thing is I feel okay today and have for a few days now. My sister has given me something called Purple Rice and I am taking this and other supplements. I just hope I am able to keep it all at bay. It's great to know that there is a support group I can turn to.

Dinkie profile image
Dinkie in reply tospam251063

Good that you are feeling okay. Forgot to say I take supplements too. Don't know whether you have had blood tests recently but vit D is often low in fibro folk and this can cause extra muscle pain. My GP does regular checks to make sure I stay within safe limits.

spam251063 profile image
spam251063 in reply toDinkie

Hi I have heard that too. Funny thing is that I have just had blood tests and I think that this is why my Doctor sent me to rheumatology I am going to go back to the Doctor just to see what the next stage is and perhaps now she might take me a bit more seriously.

Dinkie profile image
Dinkie in reply tospam251063

hopefully you will have a knowledgeable GP doesn't always happen though but fingers crossed for you. I have just changed GP as my old one told me not to bother her with anything fibro related just to put it in a letter! So I wrote and asked her how on earth was I supposed to know whether an ailment is fibro related or not - she's the medic not me! New GP seems marginally better :)

Dizzytwo profile image
Dizzytwo

Hi there spam251063 Just wanted to wish you a very warm welcome to our great team of supporters. I think our members are the best on the net but then I am biased lol . I am sorry you have been diagnosed with fibro it can be a very challenging illness at times. But I think a positive out look always helps me on my bad days of which i hope you will have few :) Wishing you a very pleasant evening :)

Momo

spam251063 profile image
spam251063 in reply toDizzytwo

Thank you. You too

Gloria_carr profile image
Gloria_carr

Hello im a day new myself, & like any diagnosis you are a bit lost but as others have said its a labal & carry on as you did before now you know what your dealing with

cespinosa profile image
cespinosa

Hi welcome to the forum, the people here are very helpful and administration team are great. Don't be scared the more post you read the more you learn. I have constant needles and pins in my hands and feet too plus fatigue and insomnia yeah can you believe it!!! Tired all day up all night go figure? And general all over pain but my meds take the edge off. Hazel_Angelstar links are a good place to start. Have a good night🌜💤. Chris

MariLiz profile image
MariLiz

A good idea to have your B12 levels tested too. I have low B12. Underactive thyroid, and fibromyalgia. These things seem to like coming along in groups!

Hopeyou get all the help you need.

khaleeseebrown1 profile image
khaleeseebrown1

Had my diagnosis on Mon so I am new to this as well it's horrible feeling like this every day

Judithdalston profile image
Judithdalston

I have fibromyalgia ( diagnosed a year ago after years of exhaustion/all over pain etc), but 12-15 years earlier also diagnosed with diabetes and hypothyroidism. After lots of research I am going down the line that fibromyalgia is often related to poor ( or no) thyroid treatment.Have a look at the sister site on Healthunlocked from Thyroid Uk: you will find lots of information, and help, about optimising your vitamin/mineral levels, especially B12, folate, ferric, vitamin D and using blood tests ( unfortunately many not done by GP) to see how the thyroid etc is working. Hypothyroid symptoms are so similar to fibromyalgia it is worth a try rather than more prescription pain killers ( which I do take along with amitriptylene (?spelling)). After ten weeks of better self medicating re hypothyroidism I am starting to feel a bit better, but I ( and lots of people on Throid Uk site) have to be prepared to question the 'normal' diagnoses many GPS/endows make from our blood tests. Fibromyalgia is largely a diagnosis of exclusion i.e. Medics can't find any other disease causing these disabilitating symptoms!

KateAL profile image
KateAL

Welcome, just remember you are not alone. What you have described is how I feel, it’s like you can feel every bone and muscle in your body in excruciating pain. X

Rainbowgirl8 profile image
Rainbowgirl8

Magnesium supplements help me with muscle pain,calcium with vitamin d,lots of daylight and zinc!Add on anti depressants,pregabalin for pain and co codamol!Pacing is vital,you are not being lazy or off with people.I jot down daily what I want to achieve and prioritise then do just what I can without becoming over tired.Once that happens it’s too late.You end up in bed next day.Be good to yourself.

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