just checking ..: hi first can I say... - Fibromyalgia Acti...

Fibromyalgia Action UK

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just checking ..

Rogan1 profile image
9 Replies

hi first can I say that this site is really helpful but I’m just wondering if anyone else has been diagnosed with fibromyalgia but does not have pain when touched . I am sore in all the points mentioned but not any worse when touched ? I’m just scared in case it is something else .. thanks all

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Rogan1 profile image
Rogan1
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9 Replies
Ninapod profile image
Ninapod

Hi Rogan1Everyone experiences fibromyalgia differently, not all having the same symptons or intensity. I have all of the sore points but it depends whether they hurt when touched - sometimes it does, sometimes not! Presumably you have been diagnosed by a doctor/consultant but if you are worried, speak to them again.

Rogan1 profile image
Rogan1 in reply to Ninapod

Hi thanks for that , I was diagnosed after all blood tests came back clear and I explained my pain symptoms but at no point did gp check me over so was just worried that maybe something else

DoubleMalibu profile image
DoubleMalibu in reply to Rogan1

I’d ask your Gp for a referral to a Rheumatologist, they will thoroughly check you out for all the points etc although god only knows what the waiting list length is.🥴 but better to be on it asap.

Debsdelight72 profile image
Debsdelight72

I'm glad you find this site helpful,You can ask pretty much anything (within reason) and someone or all has a different story to tell,

None of us are medically inclined, So we can only tell you what we suffer because of this awful body snatching, soul sucking and foul disease that is Fibromyalgia!

It is a great one for marking itself under or with our other aches and pain,

I have been diagnosed with Fibro since 2014, but have suffered for much longer,

There have been an occasion, I have wished I could just go to sleep and not wake up,I know it's the depression and anxiety you see, It just pops up in many forms to tell you how dare you feel a little relief and decide to maybe plan something nice or just go out into the garden!

sorry if this is, Woe is me, because it' s not meant to be, It's a constant reminder of how much we want to fight for a normal (as much as can be) life,

I find that If I'm in the middle of a flare, my pain goes through the roof and even putting a sheet over me,It hurts,My animals wanting to sip on my lap or worst of all my (angel) Hubby wants to cuddle me in bed and the slightest touch will hurt,

I miss cuddles but have found just a firm embrace then keep still, Has made it a little less painful, Must try more,

So, You not having the pain when touch on the points would to me a god send,

Keep a journal if poss, to keep a record of what hurts,? when? and what you eat that creates what symptom?

Last of all our doctors are here for a reason, If you are at all concerned either ask for a telephone appointment or face to face,It's the same outcome,

I will wish you the best adventure you can have

Take care

Debs

Lillylilac profile image
Lillylilac

Hi Rogan 1Like people have said before everyone is different and suffer differently. After 2 years of pain I don't have much pain now. Very occasionally does it hurt when touched. I get the disorientation and clumsiness and brain fog more than the pain now. I thank God for that but everything I do I have to do so very slowly otherwise I get disorientated and stumble or fall. I'm used to it now and thankfully I don't work.

If you are worried then please speak to your GP. Some will refer to rheumatology some won't but it doesn't hurt to ask. Good luck and gentle hugs.

Lilly x

Frenchi88 profile image
Frenchi88

Hey Rogan Just a thought with being ale to get an appointment with Rheumatology and the possible waiting time as mentioned by DoubleMalib.

My husband and myself belong to Benenden Health and it has been a god send.

If you have an appointment with the NHS that you have to wait more than 3 weeks Benenden will see you with a referral letter from your GP.

It does cost £12.80 per month per person but it really has hurried things along with our appointments.

I know finances are tough at the moment for some (including us) but this for us is a necessary pay out that we will always find the money for.

Its honestly has changed the way we get seen dramatically and also gives us great peace of mind too.

Anyway it was just an idea hope you don't mind me mentioning it .

Good luck with going forward

F🤗

Kodisnan profile image
Kodisnan in reply to Frenchi88

how do you get this insurance please I have fibromyalgia along with other things I see my Jp for and I can’t always get in in been waiting for 2 years to see weight loss doctor about gastric bypass wondering if I joined would I bee seen over my doctor?

Frenchi88 profile image
Frenchi88 in reply to Kodisnan

Hey KodisnanIf you Google Benenden it will come up and give you more of an insight or call this freephone 0800 414 8247 number and maybe ask if what you require is available to you through them.

I think in the main you have to have a referral from yourGP ..... BUT as I found out myself by chance you can do a self referral , although not sure what the criteria is for that if its at all different.

So your best bet would be to call and get some over phone advice to see if what they offer is what you want.

Good luck and hope Benenden is what tour looking for

F 🤗

Chrisbel profile image
Chrisbel

same for me, unless you dig in , but no worse when touched

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