Fibromyalgia Diagnosis / Symptoms - Fibromyalgia Acti...

Fibromyalgia Action UK
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Fibromyalgia Diagnosis / Symptoms

Misslovely
Misslovely

Hi everyone! Im new to this forum and not particularly good at sharing things about myself but i have been chatting with friends and one has advised me that my symptoms are very very similar to hers and she has been diagnosed with fibromyalgia. I have been to the gp a few times now and informed him of my symptoms and he ran blood tests to see if i was Vitamin D deficient - i was but as i explained to him, ive had a lot of my symptoms since i was a child. He has given me Gabapentin to help with my lack of sleeping and also help with pajn but its not really helping and im unsure what to say when im there again Friday. My symptoms include:

Aches in my legs - most days - but this is more than a normal ache, feels like my bones have been deep frozen & put back in my body. I am constantly aware of being uncomfortable but at least 3 times a week am in real pain and pain killers dont touch it. I feel this in my pelvis and all the way down to feet. Not just a muscular ache but a real deep bone ache

Sensitivity - now and again - i have a very uncomfortable feeling on my skin when something like a cardigan brushes against it.

Tired - all the time completely exhausted.

Cannot sleep - most nights

RLS - once or twice a week, at night adding to not being able to sleep.

Ankle pain - every day - for the past 18 months my right ankle has hurt. It is very stiff and painful in the morning and eases slightly to allow kore movement but i get a red hot burning sensation in it.

I just wondered what everyone else lives with and is there a light at the end?

Thank you xx

30 Replies
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Hidden
Hidden

Yes, I have all those symptoms plus others. It does sound very much like fibromyalgia. You could ask your GP to refer you to a specialist

Take care Lynne xxxx

Hi

I would ask your GP to check your thyroid levels, TSH, T3 & T4, fibromyalgia is a thyroid symptom and the symptoms you described are associated with thyroid problems.

Make sure you have your thyroid blood test before 9am in the morning, no eating and only drink water.

Make sure you obtain your results from your GP and then post them on the thyroid forum on here.

Don’t accept from the GP they are normal, as often although they are in the laboratory ranges, it can still mean your results are not right for the thyroid to work properly.

You are entitled to a copy of your blood results by law.

Best wishes

Peanut31

Misslovely
Misslovely
in reply to Peanut31

Yes im sure he mentioned that its normal ! I shall bring it up again thank you x

Peanut31
Peanut31
in reply to Misslovely

I was told that too (Thyroid results) but after obtaining my results, there were not.

In order to feel well TSH should be 1 or below, T3 in the upper range of the lab figure & T4 again upper range of the lab figure.

I’ve learnt so much from the thyroid forum since joining.

Best wishes

Peanut31

desquinn
desquinnAdministrator
in reply to Peanut31

Fibromyalgia is not a symptom of thyroid and is a differential diagnosis. Please read this: healthunlocked.com/fibromya...

From thyroid UK: "Thyroid UK does not subscribe to the opinion that everyone with these conditions has undiagnosed hypothyroidism."

Thyroid UK link: thyroiduk.org.uk/tuk/About_...

On a related note: This is a forum for fibromyalgia and anyone that continues a single issue campaign on another issue will be considered to be spamming this forum and will be removed. This is frequently a concern when related to differential diagnoses or "cures" and the admin team take action to ensure the forum stays on topic. Other forums exist to discuss other issues.

Peanut31
Peanut31
in reply to desquinn

Apologies desquinn

My intention was not to cause any issue on this forum or miss post any information and I am certainly not spamming as you have mentioned.

I have been struggling with bad pain, neck stiffness, tender muscles for many years, and it was suggested to me by specialist I could have Fibromyalgia.

I also have been diagnosed with thyroid issues.

It was in fact several people on the thyroid forum that sent me various links to articles that mentions Fibromyalgia and thyroid (Dr Lowe), I thought I was being helpful to others.

Obviously, this has not helped, and, as said again it was not my intention to cause upset on this forum.

Best Wishes

Peanut31

desquinn
desquinnAdministrator
in reply to Peanut31

Peanut31 thanks for your reply. I am sorry if my reply may have come across a bit strong but this is a recurring issue where thyroid and fibro symptoms cross over and people are keen to help. however our experience on here is that the conversation becomes fractured so therefore my reply above is aimed at ensuring it does not go down that route.

It is a bit of a template as it has been a repetitive subject (link above is from 3 years ago :( and was a copy and paste from content posted years prior) so please do not take it too personally and as long as you take it onboard then that's great.

Peanut31
Peanut31
in reply to desquinn

Hi desquinn

Thank you so much for your reply, it is greatly appreciated.

It did come across as quite strong, but, I'm not in a very good place at the moment as I'm struggling with pain etc so I'm very sensitive.

I didn't realise the issues you have had in the past.

No hard feelings.

Best wishes

Peanut31

desquinn
desquinnAdministrator
in reply to Peanut31

thanks for your understanding. I may see if I can at least introduce the message a bit better in future.

Hi my symptoms are very much the same however I take amitriptyline to help with the night pain and sleep and take tramadol throughout the day to

Control the pain.

I have recently started having really bad pains in my arms which I have never had before but started taking iron tablets and there getting better so not 100% sure if this is fybro or something else.

I have had fybro for 12 years now and have tried and tested most uk drugs. Burprmorphine worked wonders but my body rejected the patches. They would burn my skin and fall off after a day of two which was really frustrating.

Xx

KateAL
KateAL
in reply to Manda40

I had the same problem with the patches. Very painful and frustrating 😣 sending gentle hugs 🤗

I've all them and lots more. Ie. Ibs with mine. Athyritus too. So my tabs do not touch me. I climb the walls with rls. Night. Can't sleep. Etc.

Welcome it sounds like you’ve come to the right place, I think you would need to see a Rheumatologist but your dr might want to do a battery of tests before you get there, mine did 😩. It can take a very long time to get a fibromyalgia diagnosis. Keep going back to the Drs, you could say you think you’ve got fibromyalgia they might listen, let’s hope your dr isn’t one that thinks fibromyalgia is all in the head. I wish you luck. Sending gentle hugs 🤗

Sorry your struggling with all this horrible pain. Like you I have all this plus other Fibro., related problems as well. You do need to get referred to a Rhumetologist not only will they give you go check all over but will order blood tests for other issues. Mine picked up high calcium levels which I am now under the hospital for it appears I have parathyroid problems. Take care x

Morning duc yes it sounds like it to me you hv fibro iv got the same kind of things duc fibro is not a nice the to have there is no cure only meds ta can help you duc I'm on gabapentine that is more for yr nerve endings like in yr muscles and joints that's wat the hospital told me plus bn a pain killer it helps me abit but not much duc as for sleeping c yr doc to gv you something I'm on zo pack one I take one at nite it helps me go off I'm on a lot of meds with different thgs wrong with me duc if you can find the rite meds for yr pain it will help you iv had fibro for 5 years and it's getting worst now duc all of us on here we hv to deal with it duc it's hard cs of the pain but we try c yr doc again keep going till they sort you out take care duc luv glor x

Hidden
Hidden

Hi Misslovely, I haven't come across anyone before who has described exactly my symptoms too. When I described my pain, that feels like it's deep in my bones, to the rheumatologist, he said it's central nervous system pain, which is not common, but it is a symptom of fibromyalgia. He said the best painkiller that deals with this type of pain is Gabapentin. This drug doesn't suit everybody though. Good luck.

Misslovely
Misslovely
in reply to Hidden

Yes as a child my mum wasnt very helpful as she just said it was “growing pains” but i maintained that i felt this way. Recently my daughter whois 20 now said no one understands her pains in her lags so I described the above frozen bones and she said “ omg thats exactly it!” It is very painful. The Gabapentin seems to be taking a slight edge off but not much !

Hidden
Hidden
in reply to Misslovely

I'm taking 900mg daily. Lower doses didn't get rid of the pain. What annoys me is that I've been given the diagnosis, but what I want to know is why do I have it. Why do all of us have it. They need to find a cause.

Mydexter
Mydexter
in reply to Hidden

Why does anyone get any illness 🤔 If only we knew maybe we could find a cure for everything including cancer

Hidden
Hidden
in reply to Mydexter

Wouldn't that be great!!😁

Mydexter
Mydexter
in reply to Hidden

👍😃 yes research is going on all the time, they've found cures for many diseases like TB polio , and diphtheria for example, which were killers years ago, they are making great strides with cancer now too , so hopefully one day

Well done you for being brave to put something on here I am like your self I find it hard and not yet done it but never mind trying to help someone else you come to a great site and looks like you got some good advise so far so it was worth doing it I really hope they do find out for you what is wrong some times makes life that bit easyer wen you no what it is your dealing with its horrible being in limbo and not noing why your so poorly I hate trying to explaine my self all the time to people that don't understand with it so I now try not to just makes life easyer before you go to your gp maybe try and do a diary a week or more before putting down it all and wen you feel better and over do it how that makes you feel just try and put everything it help them but also help your self if there any type of patern wen you do go might be worth asking if you can try any other med the most important thing is to try and get a good night sleep it makes such a difference whish you good luck if you ever want any one to speak to if I can help I will take care all the best and stay strong x

Misslovely
Misslovely
in reply to Mark8

Awwww thank you!

I keep a food diary but never one for my aches and pains - its a great idea !

As sometimes we have different symptoms on some days than others lol

Hope you are well xxx

Thanks mate glad could help a bit if I can in any way or you want to ask something not say I am right but I will always try and help I have been thru loads my self so no how quite a lot of it works but your going in the right direction and well done you for makeing the first moves hope it all comes in to place now for you and you get the help and support you need life hard anoth as it is oh and by the way love your name on here thought it was great take care mate need anything just ask and I will try help x

Hi Hun have you been referred to a rheumatologist? Xx

Misslovely
Misslovely
in reply to Stevejj

No i havent!

Regarding my ankle, the gp said it sounds and looks like it was sprained but i told him ive had that particular issue over 18 months and ive not been over or fallen on it so i have given it another 6 weeks and im back in with go today !

Stevejj
Stevejj
in reply to Misslovely

Best to keep on took me 18 months to get a referral to one. I also hurt my ankle before I got ill might just be a coincidence. Hope your as well as can be xx

Hi Miss Lovely, I had to reply because I'm suffering with exactly the same symptoms as you are and also suffered terribly as child with pains in my legs and ankles and was to.d that it was growing pains, I suffered for years growing up and I now 35 years old and stand at 5 ft tall! The pain from my hips and down my legs stops me from sleeping and when I do get up in a morning I'm both exhausted and feel like the soles of my feet have been beaten with sticks its agony to walk. Have you had any luck with getting a diagnosis?

Misslovely
Misslovely
in reply to Pats83

Hi Pats83

Ive not had an official Diagnosis yet as the gp reffered me to a liver specialist as bloods came back abnormal and also a Rheumatologist so awaiting the follow up from the liver specialist regarding a fibrosis scan and awaiting appointment from reumatology too! The GP thinks it is fibro and arthritis but he wants to enaure hes ruled out everythjng first

Its a very long road! Im 45 now 😩

Symptoms are still as bad as ever and sleep is worse!

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