Frightening, weird symptoms - Fibromyalgia Acti...

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Frightening, weird symptoms

saj01 profile image
36 Replies

Hi Guys... need to talk today. Don't know if anyone else has had strange body sensations, mainly to do with sudden shivering, and something like restless legs including lower body. I had restless legs years ago, but it stopped... but this is different.

My mood is very low and I was going to ask the doc for an antidepressant as I'm waking anytime from 4 am onwards and getting exhausted... also I'm not doing much in the house..just no motivation... to be honest the house gets me down as it's like me, old, tired and worn out. There no-one to help and no money either to get jobs done. On top of this I've got reflux and terrible gas and nausea which won't go away... maybe all the swallowing of air due to post nasal drip...but can't eat much either... I digress,

I've been getting hot and really cold the next... shivering all the time, even when it's not that cold.I'm sitting here shivering... and shaking does anyone else get that?

This feeling in my legs & body etc has got worse over the past few days and I find my self running on the spot and throwing my arms around like thing possessed in order to calm down... well today it didn't work it. So I charged down the road and back a couple of times trying to stop it. No joy.

Eventually have made myself stop pacing and getting angry and sit looking at the net to find some answers and look up antidepressants etc ( i've had them before with some bad experiences and a breakdown). What I read was that restless legs is dopamine and anaemia related... but antidepressants make RLS worse! The other things that can make rsl worse is antacids- so I've read. So despite the gaviscon helping with my stomach I'm going to have to try to go without to see if it really is making things worse.

One way or another I do need help, I realise that- the feeling of anger somedays is awful and I've only got one person to blame. Sorry if I'm rambling, my mind is in turmoil and I feel so nauseous.

Thanks for listening. xx.

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saj01
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36 Replies
Alb2 profile image
Alb2

Perhaps speak with your GP? Always worth asking for thyroid level checks/full blood count but your symptoms would benefit from being discussed with your doctor. Hope you soon get some answers😊

Twinkle0411 profile image
Twinkle0411

hi there I’ve just read your post. I agree with Alb2. Please see your GP as we can only give our own symptoms as we are not GP’s.

It is a very difficult condition but I too suffer with awful legs chronic migraines unable to control my temperature and depressive episode along with many other symptoms.

We are here to listen and to try and help but first things first see your GP and remeber your not alone you can talk / message anytime. Gentle hugs.

CheetieCat profile image
CheetieCat

Hi, as everyone has already said I do think it would be good to check in with your GP as soon as you can.

Writing your symptoms down beforehand can be helpful too, if you're anything like me going blank once you're actually in front of your doctor is so annoying.

For RLS - Magnesium in tablet form or spray, lotion, Epsom salts in your bath if you can have one. Hot & cold on your legs. Massaging & stretching exercises. Tonic water or Quinine tablets.

Reflux is horrible so you definitely need some help from your GP to get that more manageable and feeling nauseous all the time must be awful.

Hope you find some of this helpful and get your GP appointment soon



saj01 profile image
saj01 in reply toCheetieCat

Hi... I take extra magnesium, but can't use it on my skin as it itches! took a bit more than usual but don't want to take too much otherwise I'll be in and out of the bathroom. I read about stretching exercises so tried that yesterday and last night... and by comparison they were a lot better... I've been drinking ginger tea and other herbal ones, with fennel, aniseed etc No coffee.... I'd love a cup... there's only so much ginger tea you can drink, but it's helping.

velogirl profile image
velogirl in reply toCheetieCat

I agree about writing symptoms down. I tried to do it a few years ago for my gp but felt it was more like a shopping list of ailments so she asked me to write to her. Maybe that is an idea? Or even take a copy of your post on here? It explains what's going on and also how you are feeling. Just a wee suggestion 🙂. Good luck, however you do it. I'm glad I did

CheetieCat profile image
CheetieCat in reply tovelogirl

I think you meant your reply for saj01

velogirl profile image
velogirl in reply toCheetieCat

I thought I had done. Sorry

CheetieCat profile image
CheetieCat in reply tovelogirl

No worries 😊

saj01 profile image
saj01 in reply tovelogirl

Received your reply all ok... so thanks for your input... think I'd feel a hell of a lot better if I could get rid of this acid stomach, gas and nausea. yuk!

fmlife profile image
fmlife

hi

have experienced the cold its like hyperthemia, the way i warmed up was an electric mat, if safe with kettle could use a hot water bottle on torso.

sleep wise am on promethazine elixar, it is an allergy drug 5mg 5pm its not enough to put to sleep although helps keep asleep at right level when get there,

am also on laxido and omeprozole and a 20minute before food tablet.,

ended up in hospital with a sudden stomach pain after standing, drinking fluid made it worse,

up to that pain also was feeling full although not eaten, felt slightly drunk although t total,

the hospital did a ultra sound said was gas and impaction, and cameras came later after the laxido to check inside plumbing .

nhs.uk/conditions/constipat...

see if can get to your gp, to discuss these issues asap.

the home a little bit and often is better than full on every room must be sprung cleaned.

only plan one easy task, anything else achieved is a bonus.

gentle hugs

saj01 profile image
saj01 in reply tofmlife

Some of those meds to line the stomach make me nauseous... i've not heard of the allergy on so will look it up. as I'd love to sleep a full night... I'm awake at 4 ish virtually every day. No wonder I'm knackered. Re jobs, there's only me to worry about, I really need to knuckle down... think it's a bit of depression.. and thanks.

Cat00 profile image
Cat00

Could it be Menopause? Obviously no idea what age you are but I watched a programme on it yesterday and it sounds similar to what you describe. I'm 45 dreading having to deal with it on top of everything else.

Gaballetto profile image
Gaballetto in reply toCat00

That was my thought too. I found that white wine (and some foods) did that to me at menopause time. Restless, unable to settle (like I had restless everything syndrome), cold then hot, blah blah blah. Also, some of the meds I was on seemed to make it all worse, so, over time I have dropped everything off, and now just on tramadol twice a day and my HRT, and not many episodes anymore.

The menopause doctor had to trial me on various different combos to get something that didn't cause any issues like that, too.

Cat00 profile image
Cat00 in reply toGaballetto

My mother didn't have any menopause symptoms bc she was on HRT already for Osteoporosis. I know I have Osteopenia so I'm kind of hoping they'll put on it too so I don't have to go through it all!! Although on the up side I have chronic migraines, for over 20 years now, and my neurologist said it might get better after menopause so you never know. Swings and roundabouts.

saj01 profile image
saj01 in reply toCat00

The menopause has long gone, so the hot/ cold isn't down to that... it's different to hot flushes... hard to explain. By the way, I used to have regular headaches, they stopped after I stop taking the pill. if that's of any help.

Cat00 profile image
Cat00 in reply tosaj01

I'm taking a pill which means I don't have periods but that's bc I get really bad IBS type symptoms from having my period. Although for years I wasn't on a pill and my migraine frequency was the same. It's all a bit crap really. I hope you can get the bottom of your problems, it sounds very isolating. Have you had your heart checked out? My friend has heart problems and it can make you feel very very weird.

saj01 profile image
saj01 in reply toCat00

I haven't had it checked out recently... but after a funny turn in march they thought I'd had a stroke and i wore a heart monitor... it was all ok. I hadn't had a stroke at all so they put it down to high blood pressure.... not surprised as I was in a lot of pain and stressful things happening at the same time.. It's settled down. Life's a bitch!

Cat00 profile image
Cat00 in reply tosaj01

Yes I know what you mean I have a high heart, about double my husband's, I'm pretty fit, the doctors just say "well you're an anxious person we're not surprised" which seems a bit lame.

I've been on Amitriptyline for over 10 years, it can effect your heart rate. It can make it higher or lower but are supposed to have regular/yearly echo-cardiograms if you are on it. I've only had a couple in that time doctors don't seem that concerned but generally.

catherine19611 profile image
catherine19611

hi

i have had the hot and cold spells as well. one minute totally fine, the next go icy cold then after a while raging hot. my mother had hughes syndrome, when i researched that it did say that people who had hughes syndrome very often had a close relative with fibro, she had a lot of these episodes of freezing cold then raging hot or vice versa, we found that when she had the freezing cold spells if she took a paracetamol tablet, the cold spell stopped but she did then go raging hot (a bit like a hot flush). during the 'cold' spells even her and my hands go icy cold, as if they have been in a freezer, and it can be a really hot day. people have said to me to see my gp about it, i tried, unless you can see a doctor whilst it is happening, there is nothing for them to check, as by the time you get an appointment it has stopped. i also found that most gp's have never heard of it.

somebody did ask about these on here quote sometime ago, and there were so many people who also have them

saj01 profile image
saj01 in reply tocatherine19611

I've not heard of hughes syndrome, had to look it up. I do have raynauds and my fingers go all sorts of colours.... my feet are grounds for divorce! So I feel the cold anyway... but these the sensation are all really strange. When I've spoken to the doc, not sure she knows a lot about it, but as you say the symptoms have usually stopped.... typical!. I'm surprised there isn't more help, given how many of us have it. I'm trying to find some warm gloves and mitts... can you recommend anything? .

catherine19611 profile image
catherine19611 in reply tosaj01

she was diagnosed with ms and for 42 years that is what the doctors said it was, she had to go into hospital every few years for a blood transfusion for anemia. the last time she went in, i think it was 206, the doctors said that as she hadnt seen a consultant in over 20 years they wanted to do an MRI and cat scan, i was there when they came in to see her with the results.

they said that they were confused as there was absolutely no evidence to show she had or had ever had ms. there was also no evidence as to why she was paralysed from the chest down. she asked the doctor if it is not ms what is it, the responce was, you have had it for 42 years do you really need to know what it is called.

my cousin sent her a front page of their local paper, where the lead storey was about a woman who had been told she had ms for 20 years, they then tested her for hughes syndrome and she had that and not ms. my mom was tested for hughes syndrome and she also had it. according to their website , they found through their research that, 1 in every 3 people who have been diagnosed with ms actually have hughes syndrome and not ms. hughes syndrome is treatable with asprin or in severe cases warfrin. doesnt say a great deal for your life in our hands, does it

saj01 profile image
saj01 in reply tocatherine19611

I sometimes wonder how much of our treatments are guess work!.

Mum007 profile image
Mum007

I can relate to those symptoms but it’s usually when put on a new medication. Metaclopromide for example, an anti nausea drug. Also there are many medications that make restless legs worse. Can you list any medications you are on. I also have acid reflux and although ppi’s cavv Cw n make it worse, gaviscon should be ok.

saj01 profile image
saj01 in reply toMum007

Hi... does your anti nausea one work... I'm not taking any at the mo becuase they all give me horrible side effects.... even the ones to line the stomach make me feel sick... , funnily enough I've been taking gaviscon & rennies for a while , I deliberately didn't take it after dinner and before bed... that, plus some stretching exercises made all the difference... so will do the same again. and see what happens.

Mum007 profile image
Mum007 in reply tosaj01

I can’t take the anti nausea ones because they give me severe restless legs, tremors and agitation. Gaviscon is ok. Tennis May give you restless legs. I find esomeprazole don’t always give me restless legs but everyone is different. They are the only medication that stops my nausea within 24 hours. Take them 40 minutes before breakfast or dinner on an empty stomach.

1whitestar profile image
1whitestar

sorry to here this , I have had restless legs with my fibromyalgia also my jaw locked up could not eat for couple of days. And also experienced bad tummy pains sick feeling. You take care.

saj01 profile image
saj01 in reply to1whitestar

Poor you.... you must have been so hungry.... I hate the nausea ... once in a while is bad enough but every day is just horrid.

Whiteclouds profile image
Whiteclouds

dear Saj01, so sorry to hear you are not very well at the moment. Please go see your doctor. Someone may have similar symptoms as you but that does not mean they have the same health issue also the meds they take may not be the meds for you. The doctor will evaluate and make examinations and look at your health history and bloods to access what is your best treatment. Hope you get the best help from your doctor very soon. Best wishes for a speedy recovery.

athenadark profile image
athenadark

my gp explained to me that IBS is something you just get free with fibro, like a gift bag of awful other things - migraines, etc [would return if i could] and it at least is relatively easy to get under "control", your doctor will prescribe buscopan if it's cheaper for you, but otc stuff like bisodol or rennies [for acid reflux] peppermint caps [don't get brand name they are stupidly priced, you can get equally good ones in larger amounts for cheaper in most health food stores] for wind, none of which will mess with your meds

ibuprofen is notoriously bad for your gut and the older you get the more it complains, I know my doctor included omeprazole because its just inevitable, ask your doctor about it

as someone above said, get a notepad write down the symptoms [including the poor sleep] and when it happens, make notes beside it, like was good today, or couldn't get heat into feet at all,

we all get in front of the doctor and immediately go - no, I'm fine or something to that effect, write it down no matter how silly it seems because sometimes it's a process of elimination and something they can look at three silly symptoms and go - oh it sounds like that and send you to be tested for it

saj01 profile image
saj01 in reply toathenadark

I do wonder is the stomach problem has been caused by things like ibuprofen etc.I used to take a lot for pain but try not to now. Strangely enough the anti nausea ones me make me feel sick too!,,, I wish I knew why. I'm being sent for a scan to see what going on with the stomach etc. That's a good idea about noting things as it's easy to forget something. I'm due to see her again when she's back.

BILL-D profile image
BILL-D

hi I have had periods of being hot n cold. I have been sat outside on holiday in the middle of summer in a heat wave when everyone was in bikini s shorts etc and I had to wear track suit bottoms n hoody with hood up feeling freezing.

I have found if I am cold indoors I just get up walk outside for a few mins then come back in and I am usually then boiling hot.

Hope that helps

saj01 profile image
saj01 in reply toBILL-D

Think it's called sod' law! Hot weather has never been good for me... so this last summer was unbearable! I might try going outside... but right now it jolly cold today!

Looby101 profile image
Looby101

hi Saj, I suffer with reflux and stomach problems, also with rls and insomnia.

I started taking buscapan a few years back and thankfully it has helped with my reflux, I don’t seem to get rls as often either. Talk to your GP about it, it may not be right for you so I wouldn’t just go and buy it until you have consulted your GP.

It also helps a lot with my IBS as that’s what it is used for mainly.

saj01 profile image
saj01 in reply toLooby101

Hi... someone else has mentioned that one... so I'll look it up and ask the doc about it... thanks a lot.

Dinkie profile image
Dinkie

Ahh the dreaded WTS (wonky thermostat Syndrome) mine goes along with the internal tremors (feels like I've swallowed a vibrating phone). In my case all put down to the gift that keeps on giving - fibro.

Where there is constant pain it is not unusual for depression to set in. Please see your doctor. Perhaps some CBT or a referral to the pain clinic may help.

saj01 profile image
saj01 in reply toDinkie

You made me laugh... thank you. I'm not surprised about it causing depression... it's such a horrid thing to have sometimes... worst of all that it doesn't go away! .

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