Soooo tired of dealing with this pain. - Fibromyalgia Acti...

Fibromyalgia Action UK

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Soooo tired of dealing with this pain.

cefnonn1 profile image
28 Replies

Hi this is only the second time I have been on this site and I think you are all amazing. I am just curious if there is anyone else with raised Parathyroid levels and bladder pain and if so how does it effect you. Also the pain in my neck and arms is so bad at the moment I just want to cry it's a struggle to carry anything. I find I am getting pain in the arm muscles right down into my wrists and hands also burning inside of my elbows is this normal with Fibro. Hope someone out there is able to give me some advice.

Gentle Hugs to you all

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cefnonn1
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28 Replies
Kimba1 profile image
Kimba1

Hi I'm also new to the site but yes I'm struggling to with hand finger wrist and arm pain it's like i can feel every bone, tendon, muscle and all the air in between and it all hurts and burns. I also have for the past month been feeling like thousands of tiny electric shocks in my hands and fingers and am struggling to squeeze water out of a washing up sponge is this how you feel xx

cefnonn1 profile image
cefnonn1 in reply to Kimba1

Hi Kimba 1 don't like saying this but thank goodness I am not the only one dealing with these symptoms and yes yours sound almost exactly the same as mine. My arms feel so painful and sore even getting items out of my handbag hurt. I feel about 90 years old. I dread drying my hair after washing it because it hurts so much to use the hair dryer and straighteners. Not just my arms but the standing makes my legs ache so much.

Please take care and thank you for replying x

in reply to Kimba1

Oh wow that hit the nail on the head for me!!!!my hands have been getting steadily worse this last few days,but I always seem too get bad/painful hands in winter, iv been the same with the hurting when you wring out a cloth or sponge,its a blidy nightmare too put it bluntly😕xxx

angelikjan profile image
angelikjan in reply to Kimba1

Hi Kimba 1

I used to suffer with your symptoms. My gp sent me for nerve tests and it turned out I had carpal tunnel in both wrists.

Since diagnosis I've had operations on both wrists and almost 100% better.

Maybe go see your gp.

Good luck I hope you get sorted.

Take care

uggycat profile image
uggycat

Hello cef. with the arm pains and symptoms I have the same thing also neck. pain. l have been diagnosed with fibro, l had a full body scan, so at least I do know what are causing my symptoms. . could you ask your doctor to check these symptoms and see what is causing them , then perhaps they can help you get the right relief, julie

cefnonn1 profile image
cefnonn1 in reply to uggycat

Hi uggycat thanks for replying. I was diagnosed with Fibro after going to a hospital pain clinic and Rhumatologist about a year ago but suffering with pain for about 3. Because I have to be alert for my Mum who is 90 years old I do not take the strong meds usually prescribed. I do take a low dose of Amytriptyline to help me get some sleep in the night. I am waiting to go for a follow on appointment to the hospital for high calcium levels (raised parathyroid levels) which also aggravate Fibro pain especially in the bones. Hopefully in January when I go I will understand a bit more. Take care x

in reply to cefnonn1

Hi hope you find some pain relief,and welcome too the group☺nice pic BTW,did you take it ? x

cefnonn1 profile image
cefnonn1 in reply to

Yes I live in South Wales, GB, this is Ogmoor by Sea about a 20min drive from where I live and a favourite place for beach combing with my grandchildren. The day this was taken was very overcast and moody but lovely atmosphere.

in reply to cefnonn1

Its a good.picture

uggycat profile image
uggycat in reply to cefnonn1

That's what the puseudo gout is high calcium levels. be interesting

to see what they offer you for it. whats parathyroid levels?

cefnonn1 profile image
cefnonn1 in reply to uggycat

Hi Uggycat we have 4 parathyroids in the front of our neck very close together, completely different to the over active and under active thyroids, sometimes a small non malignant growth can grow on one or more of these. Apparently they can cause high calcium levels in the body. When I had my appointment with the Rhumetologist who diagnosed Fibromyalgia they also took bloods which showed the raised calcium levels. I have an appointment in January and they will discuss whether I need to have the thyroids removed. Funnily enough they can also cause extreme pain all over the body and aggravate the Fibro.

It will be interesting to see what happens. Hope I haven't bored you but the fact that they can cause so much body pain is interesting. x

uggycat profile image
uggycat in reply to cefnonn1

l have underactive thyroid under control now x

uggycat profile image
uggycat in reply to cefnonn1

I was led to understand once it is all over ones body like mine there is not much that can be done to get rid of it, only anti inflametrys are meant to help ease pain. my friend had calcium deposits in her shoulder joint, the surgeon did remove the deposits and it eased the pain x

marouska-10 profile image
marouska-10 in reply to uggycat

Hi what did they find out re your scan ? Curious to know xxx

uggycat profile image
uggycat in reply to marouska-10

Hello marouska sorry took so long to reply, they found puseudo gout and the fibro was diagnosed as well with the scan. also how bad my ostio arthritis was.

marouska-10 profile image
marouska-10 in reply to uggycat

Hello uggy cat

At least your tests show something a mixed blessing I guess?

Mine show severe Dysautonomia and I now feel cheated that I was made to think these are separate issues when clearly they are not

I must find a sympathetic GP

The graded exercise doesn't work with me as it exacerbates BP and fight mode of the nervous system

Hope you rest well tonight and to all of us xxxx

rosewine profile image
rosewine

I find my pain is always worse in the winter. I think with the cold weather we also tense up which affects our neck, shoulders the most. Hands and feet are also joining the orchestra of pain you have my sympathy.x

in reply to rosewine

Ughhh, hate winter. And I am in Australia, so not as bad as in UK. I have to go away and travel or stay somewhere warmer in winter as I cannot cope in winter if I stay home.

GemS07 profile image
GemS07

Hi,

I’ve just joined the site.

The pain in my neck, shoulder, arm and hand is horrendous atm. It feels like a hot knife is being pushed into my joints and muscles when I try and move, lift, carry etc, but there’s always a stiffness and aching regardless....but I don’t mean to sound horrid, but it’s nice to hear people have similar symptoms too, so we all know we are not going mad or alone.

Gentle hugs returned x

I get the pain in my neck, spreading down to my shoulders and back. My arms tend to just get very stiff and feel as if the bones hurt if I rub them.

I've found it's a case of treating the symptoms. Soluble paracetamol with caffeine works quickly ( I get too many side effects to risk the prescribed meds) Salonpas patch on my neck, or Perskindol gel. Heat might help, either hot water bottles or one if those electric heated capes. I also find a hot shower, directing the water onto my neck and shoulders helps.

in reply to

These symptoms of neck, shoulders and arms are also symptoms of PMR. Polymyalgia Rhumatica. Perhaps you could look into this. I have had FM for 10 years then also got PMR a year ago.

Kimba1 profile image
Kimba1

My doctor asked me to describe the pain in my arms hands ect once and i said it's the feeling you have in your arm when you have a blood pressure cuff on except the feeling doesn't go away when the pressure is released xxx

in reply to Kimba1

Oh yes, and when you do get your blood pressure taken for real you say hurry up and get thst thing off me. Yes it is like a giant picking you up by the arm and squeezing it....arggghhhh😠

I'm still waiting to see an NHS rheumatologist. Was referred in March or April and just received an appointment for December 18th. As there was such a long wait I paid to see a private Rheumstologist in May, who diagnosed fibro. It's been useful as I've now got a lot more questions to ask the NHS Rheumy and I'll add your suggestion to the list. Thanks, Hidden for the info.

in reply to

The tender points testing is pretty standard now for a FM diagnosis. Wow that is a long wait for a specialist! I suppose nhs is the public one. Im in Australia so bit different. But our wait lists are not that long. Good grief. I was also going to ask you about any fatigue?

fluff26 profile image
fluff26

We share so much pain. Get so sick of it. Wish we could get a day off from it occasionally !! You sound like the pain in your shoulders and neck is the same as mine too. ]along with everything else] It is definitely true that this blinking weather has a lot to do with pain. I can honestly say that on holiday, in Fuerteventura , lovely and warm[hot] my body wasn't suffering like it is now. You are not alone. I have been using my warm up lavender bag around my neck, it seems to ease it a bit. perhaps someone can invent a warm up body suit ? ha ha . I am waiting for hormone blood test results, as may go on HRT . Doc says this will help with my joints. Blimey, something else to think about , not only got fibro & osteoarthritis, the flippin menopause has landed !!!

Sorry I've not been much help really. just wanted you to know someone cares. luv Mandy XX

spider555 profile image
spider555

I have burning long needles in my hands. It's like having Edward Scissorhands 😣

cefnonn1 profile image
cefnonn1

Thank you to everyone who have replied to my post. It seems we all have so much in common. I also believe that we are very strong people we must be to cope with so much pain. Take care all of you and sending gentle hugs. I will let you know what the outcome of my appointment in January is regarding the high calcium levels. xxx

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