Tina twitcher: Hi I've had fibromyalgia... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Tina twitcher

Tinaspoon77 profile image
9 Replies

Hi I've had fibromyalgia along time now at least 20 years.because it's a long time since I was diagnosed I've forgotten all about fibromyalgia and what it does to you .I've get a lot of stuff wrong with me now and I never know which symptom belongs to which health problems I have. I fall sometimes..my legs just go and that's it I'm on the floor .sometimes i get this weak feeling in my legs and i know there going to fall and sometimes i dont know. when I sit my legs sometimes times jump and twitch.same goes to my hands and arms .the twitching in my hands is really bad,they twitch and jump but the main problem is my hands,I'm dropping stuff all the time day in day out and tonight was a jump too far and I broke to pieces tonight cos my hands went and I lost half of my dinner on the floor thanks to losing control of my hands.I'm always dropping and breaking stuff all the time and I've had enough of it. The many fones and laptops ive broken is crazy.I've either dropped them on the floor and broke it or dropped and spilled something on them and my carpets are ruined cos of the food and drinks spilling on it and cups and plates get smashed .now I have to use mugs with lids and plastic plates cos it's ridiculous the amount of cups I break.the shaking and twitching gets bad and I've had lots of burns thanks to that happening to me..the short term memory is really bad I repeat myself all the time,can't count forget people's names etc,I can't explain but it affects my life really bad..I don't have a cooker no more cos of leaving the cooker when I'm cooking totaly forgetting I'm cooking.I can go on forever,there's loads of stuff wrong with me and I think some of it fits with fibromyalgia and some don't and to top it all I had my lower leg amputated in Feb just out of the blue thanks to infection due to uncontrolled diabetes and the infection damaged my kidneys leading to kidney failure and dialysis .I would like to contact anyone who is going thru the same things as me I would love to hear from them

Tinaxx

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Tinaspoon77
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9 Replies
tulips123 profile image
tulips123

Hi Tina. I can relate to dropping things all the time, been using plastic to eat/drink for the past 2-3? years. It can be so frustrating when pretty much everything ends up on the floor! I had surgery for Carpal Tunnel which was partially successful but not for long. This was done following a Nerve Conduction Study, which presumably means there is a Neurological issue, which is also like FM I believe? Over recent months Sciatica has been getting worse, leading to worsening symptoms of heavy aching from my lower back, down via buttocks into my legs, feels like dragging and then buckling at my knees. I assume once again, Neurological in origin. My memory is very poor and oh so very frustrating! However, I am very lucky to have an excellent GP, + the best ever support from close family. You don't mention having any useful or positive support from anywhere?

I have Diabetes, but thankfully it's controlled (most of the time) by diet, and a tablet. I was so sorry to read you have lost a lower leg, and then kidney damage. I can only imagine what you must be going through!! Do you have any support at home?

Tulip xx

TheAuthor profile image
TheAuthor

Hi Tinaspoon77

Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link below to our mother site, FMA UK which hosts loads of useful Fibro information:

fmauk.org/

I am so genuinely sorry to read that you are experiencing so many health issues that are affecting your life so much., and I sincerely hope that you can find some resolution and relief to all of your medical conditions.

Your leg shaking / twitching sounds like it could be ''Restless Leg Syndrome?'' I am not a doctor so I cannot say for sure. I have pasted you a link below to the *NHS Choices cache on this:

nhs.uk/Conditions/Restless-...

I have also pasted you an excerpt from their cache, as it also states that RLS can affect the arms as well, so I wondered if this is something that maybe you could discuss with your GP? There are medications that you could discuss with your GP that can help with your twitching:

*Symptoms of restless legs syndrome

Restless legs syndrome typically causes an overwhelming urge to move your legs and an uncomfortable sensation in your legs.

The sensation may also affect your arms, chest and face, too. It has been described as:

tingling, burning, itching or throbbing

a "creepy-crawly" feeling

feeling like fizzy water is inside the blood vessels in the legs

a painful, cramping sensation in the legs, particularly in the calves

These unpleasant sensations can range from mild to unbearable, and are usually worse in the evening and during the night. They can often be relieved by moving or rubbing your legs.

Some people experience symptoms occasionally, while others have them every day. You may find it difficult to sit for long periods of time – for example, on a long train journey.

Just over half of people with restless legs syndrome also experience episodes of lower back pain.

I do not know if you have done this already, but it may prove beneficial to contact your local Social Services and ask for an ''Occupational Health Assessment''. I want to sincerely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you

Ken

Treewade profile image
Treewade

Hi Tina I suffer some of your Symptoms and would like to say I am here for you xxxxx

Sorebones profile image
Sorebones

Hi Tina. I'm taking it that you've been keeping your GP up to date with all the problems you've been having. If you haven't then you really need to.

I do understand only too well. It's far from pleasant. I started reaching for a glass and totally misjudging it ending up with a huge puddle of squash and ice dripping off the table and onto the carpet. I thought it was a fluke! Until it happened again.

I really need to take it more seriously and get something done about it. When I've mentioned it to my GP before she was sympathetic but unworried and I was told to 'keep an eye on it'. I have given up mentioning so much to my GP as nothing is taken seriously and all put down to my 'wear and tear'. That has to be one of the most insulting put downs a Dr can give you in my humble opinion. I know they can do very little about it but, for goodness sake, it's not normal!!! I'm in my mid 50s and shouldn't have problems with dropping things and falling over all the time. Grrrrr.

Sorry, didn't mean to rant! I really just wanted to say that I understand, you are not on your own 🐸

Shamrockgirl profile image
Shamrockgirl in reply to Sorebones

Am so with you on the GP issue, currently have a very nice, kind GP but seems very vague all the time, puts almost everything down to my Fibro and I faught for nearly a year to get him to refer me to hospital as my symptoms, especially memory, was so much worse. I also had issues with him in 2014 over a taxi from my home to an ATOS assessment about 45 miles away & ended up getting other GP in practice to do it. People said why didn't I change surgeries, but that's not that easy when you're in the middle of an ATOS/DWP saga, you have all your meds and day to day life is hard enough and getting harder. I'm 55 in July, so hardly an "aged pensioner@?!

Sorebones profile image
Sorebones in reply to Shamrockgirl

I have a year on you lol. I object to the fact that my own body thinks it's old when my brain doesn't lol. It is very annoying when you are 'put out to pasture' so to speak. I was medically retired before my 50th birthday. It's no wonder we feel we've been put on the rubbish pile at times. Like you I am NOT old enough to be put out to pasture!

Hope you have got your ATOS (bas****s) problem sorted out. The added stress will not be good for you 🐸

Hi

Wow, you poor thing, I'm so sorry to hear of all your health problems. No wonder your fibro has gotten worse with all the stress you must be under!

My Fibro effects me as yours does, stress and other illness I find does make it worse.

Nothing like you've experienced though, I must say.

I've been told that relaxation, pacing yourself is what we need to do.

Have you tried Hemp tablets to help you relax, they've got chemicals in that marijuana has in, which some countries allow for pain relief. I get my hemp from Amazon.

I'm sorry that I can't suggest anything more to help. I do hope that you begin to feel a little better soon.

Take good care of yourself.

Best wishes.

rosewine profile image
rosewine

CanIwelcome to the forum. I read your post with much sadness as it seems that you are having one set back after another. I can totally commiserate with dropping things as the times my dinner has landed on the floor are too many to count. I now put everything on a tray with one of those mesh rubber mats on it as it seems to help grip the plate. Today I decided to make the OH a coffee. He must have just filled up his canister this morning and yes I dropped it so a while canister of granules went everywhere. Unfortunately most of it went down to side and the back of th cooker which he had to to clean it all up. My hand suddenly shot through with pain and as you say twitched and there is nothing you can do to stop whatever you are holding flyng through the air. It always seems to be something liquid or granules which are the worst to try and clean up.

If you are not getting help do do as TheAuthor suggests and get a full assessment. Come on here as often as you like for support as there is usually someone around. Look forward to your further posts.x

Shamrockgirl profile image
Shamrockgirl

This really speaks to me on so many levels, was diagnosed with Fibromyalgia back in 2004, but have added many more ailments since then. The most serious are the Scoliosis and the Osteoarthritis, had to have 1 hip replaced at age 48, other 1 is in bad shape and the Arthritis has spread rapidly. I too am finding more and more tingling, pins and needles, especially in my hands and this is causing major issues with dropping things and more. Seriously thinking I'll have to get a tray to carry drinks, plates etc,. to add to my list of other disability AIDS, oh joy!!

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