Can anyone with Fibromyalgia please tell me that if you get cold, do your pains get so very bad that it makes you cry ??? .But then when you turn the Central Heating on you feel like you're burning and your skin crawls. I'm like that right now and it's b****y killing me. I can't stop shaking and my body is jumping. My poor Husband don't know what to do to help me. Everyone's is telling me that I should be in Hospital because of how I am jerking and getting so short of breath because of the pain. I have Valvular Heart Disease, COPD and Asthma which doesn't help. But its the pain that's making my breathing shallow. I don't want to go back in Hospital ,I'm so sick of the place. .But nobody understands unless they have it. If anyone gets like this, ( Oh,what do you do, how do you handle it. Ive been up since 3 AM this morning because of the pain, and it never eases up in the day to let me have a little sleep .Driving me mad.😱 Can't stand much more of it ,but what other options do we have. EXCEPT THE OBVIOUS. If anybody can help me, please get in touch. Thanks. Gjkas xx
Please can anybody. with Fibromyalgia... - Fibromyalgia Acti...
Please can anybody. with Fibromyalgia give me some advice on how to cope with the Agony when you get either Hot or Cold.So very depressed.
I’m so sorry you’re feeling so bad. I get worse with cold so I’m constantly hugging a hot water bottle under a duvet right now. Warm baths with salt helps with muscle pain. It sounds like you need a medication review - perhaps you don’t have the right combination of drugs right now? I have to juggle painkillers for different types of pain. Hang in there. Glad to hear your husband is there and sounds as if he cares x
Oh Hi Maya, thanks for getting back to me. Ive tried the warm baths with Dead Sea Salt because I read somewhere that it was good for Fibromyalgia.It didn't help at all..Even when I have a normal bath with no salts in, ( The B****y Pain gets Worse ) Just don't understand whats happening to me. I know i have a lot of other medical problems but I don't know how much longer I can handle them all. Too many problems for 1 Body.
That's what the Doctors at the Hospital told me. The one Doctor on the Surgical ward calls me a Nightmare.He wasn't being Nasty, just being Honest
Oh God, PAIN SUCKS. x
I agree with Maya medications you are using need a look at. Meanwhile have you learnt and practiced any deep relaxation techniques? Pain is real fair enough however the more we tense through pain ,more pain we feel etc. A few ways to get on the way to be relaxed can help manage pain. In respect of temperature changes wearing light layers is helpful. I bought thermal vests last winter and think it was a great purchase. I also try and keep my feet off the floor at home using a pouffe so my feet & legs do not chill.
Hope the pain subsides soon. Gentle hugs
Hi thanks for getting back to me I went to my G.P 2 weeks ago about my medication, but they won't change anything because I'm under the Pain Management Doctors, my G.P said all she could do is give me just 1 extra BUSCOPAN a day.
Big deal, i can buy them from the bloody Chemist. I told her I need something because I am in Agony.
But it felt on deaf ears. Trouble is i only get to see my Pain Management Doctors twice a year, thats it, Ive been to the Mindfulness classes. Ive got Relaxation C Ds at home which used to help a little, but not anymore. Ive had Depo Steroid injections in the top and bottom of my Spine, they didn't help.Iv also had Acupuncture
I can't use the Hydropool because my Cardiologist said my Heart is too weak to use it because of the water being quite hot.
I can't do Mindfulness anymore Skit because the pain is so bad that I can't seem to concentrate on anything else. OH God I have never been like this before .Thankyou so much for your help and advice Gjkas xx
Surely your GP needs to send you back to pain management so they can tweak your doses? The only alternative I can think of, taking into account how desperate you feel with the pain, I would call an ambulance to get admitted for emergency pain management. It sounds to me that you’re at the end of your rope and need help to get you through this horrible episode of pain. X
Stop fighting the pain. Surrender to it. This does sound crass. Fighting uses up energy. Surrendering reduces energy being burnt up. The brain can do funny things when exhausted. By surrendering the brain allows itself to rest and recuperate.
Move your muscles slowly. Do not force anything. Take time to watch children at play. This will help relax you and ease some of the tension. Children when they are engage in play move their muscles in a way that removes emotional tension. As adults we have forgotten how to do this.
I am still working on this idea of using movement to change emotion from one of despondency to one of all is right with the world.
Sleep is important. Research has indicated that the brain only gets rid of its waste products when it is asleep.
If you are able see a McTimony chiropractor. There are things that they are able to do that may prove helpful.
"Stop fighting the pain. Surrender to it. This does sound crass."
No thanks!
The day I surrender to my pain will be the day I take all my meds in one go and give up completely.
I will fight my pain with every breath and completely ignore any hippy guff that suggests I try and move like my kids.
If I tried to mimic my kids' movements at play I'd end up in hospital.
Nice work up to the ad at the end though.
You're right it sounds very crass.
On a more positive note speak to a real doctor about clinically proven alternative methods of pain relief like TENS or even acupuncture before giving money to snake oil therapists.
If there is a pain clinic near you ask your GP for a referral.
I have been through the whole range of traditional medicines and nothing works but my TENS machine does provide some relief.
Acupuncture (available on the NHS) worked for a while but didn't last for me.
I would recommend you take Mr Smith's advice and watch kids at play and ask yourself if you can run around like a banshee and not end up in excruciating pain.
We haven't forgotten to move like kids, we just stop doing it when we get older and it starts to hurt (whether or not we have Fibromyalgia).
Oh Carlt, that's just what I feel like doing. Taking all of my Meds in one go and be out of it all. I can't surrender to the pain, it's driving me out of my Skull .Ive tried the Tens machines and Acupuncture Ive had Steroid injections in the top and bottom of my Spine but none of them have helped.
My Grandson brought my little Great Grandson to see me today. But after half an hour I had to ask him to go.
My head felt like it was gonna explode.
A couple of months ago when I was in Hospital for a suspected Stroke, just by chance. They found a few other things going on with me that they didn't like. An Enlarged Liver ,Blocked Bile ducts, Cyst on the Pancreas and Gallstones.
I been told now that my Liver has gone down and my Ducts seem to be clear.
I have to go to EBBW VALE HOSPITAL now next week to see a Specialist there ,to see whats what. I know im a bit stressed over that. But the bloody Fibro pain is the worst, its like it's gone out of Control .
Where the Hell did this Disease come from. HELL I THINK.
Anyway Carlt thanks for your Advice and for taking the time to read all my winging
Take Care Gjkas x
One day they might suggest we perhaps join a local chapter of some Masochistic Society if such a thing exists,,, we could do it after we have finished the singing to wipe away our pain,,, on thinking about it perhaps the two might not work together!
Perhaps thats the next move,, were going to be told,, that the way it is,, learn to like it.
Ray
No, thinking about it Ray. I must agree with you, i don't think that the two would work together.
And as far as any of them saying, That's the way it is,,,
Learn to like it.
I think i would gather all my strength together and batter the bloody lot of them.
I'd probably hurt myself more than them. But I'd still have a go.
Then I'd get arrested, but you never know. They might have better Doctors in the Detention Centre's or Prisons or wherever, than what I have got..
OOOH gotta go now Ray.😰😱
Hurting like SHITE. Gjkas
I have taken time to think how to reply. This is my answer.
Fighting requires the tensing of muscles. Tensing muscles around the site of pain will make the pain worse.
Surrendering causes muscles to relax. Relaxing muscles around the site of pain will reduce the pressure on the pain site with reduction in pain.
Tense muscles get in the way of being aware of yourself. This can result in the way you do things do damage to the tissues surrounding the pain site without you being aware of it.
More relaxed musculature will enable you to be more aware of yourself and as a result more able to avoid damaging the site of the damage that is causing the pain.
I took no time at all to think about a response and this is my answer.
I can be perfectly calm and relaxed whilst fighting a horrible condition.
Surrendering to it makes one depressed which causes stress which causes tension and more pain.
A positive fighting outlook causes much less stress and tension than your bleak, depressing surrender.
You advocate the complete opposite of what I would describe as a positive solution to chronic pain.
You submit to it if you want but I never will.
I can't recall anywhere in history where "Surrender!" was a positive action.
Could you please tell me who a McTimony chiropractor is. Ive tried just about everything else.
Oh ,just to get rid of all this pain and have a good night's sleep would be just
SOOOOOOOOOO GOOD.
Something we all take for granted,until all of a sudden its gone .😕😨😱
Thankyou for getting back to me.
Take Care Gjkas.
Which country do you reside in?
Only just read your message. In so much pain..
I live in SOUTH WALES.
OOOH, can you help. 😰.Gjkas.
I googled "Mctimoney chiropractor south wales". Hopefully this should help.
You will need to do other things as well to help. Habits are so powerful that you can have a treatment that re-aligns the body. Then you can can go and engage in a muscular habit that pulls everything out of alignment again.
I have chiropractor treatment every six weeks. I also have Alexander lessons. I also engage in T'ai Chi and meditation.
Hi, If I get cold l get really stiff and painful joints and muscle aches. Last year I bought an electric blanket and it has helped. If I get cold and stiff during the day I will go to my bed and warm up my joints and muscles this way. I highly recommend an electric blanket. Have got one that allows you to control the temperature and that has two controls so you can just heat one half of the bed.
Hope this helps.
Hi am so sorry your so unwell and suffering with the pain. Try keeping a food diary and be very careful what you eat. I have noticed if I stick to fish eggs salads and fruit my pain calms down. I have had to get rid of anything in a tin or packet or else I pay the price. The instant I eat like a normal person have a coffee and chocolate biscuit then my reynauds flares up and I am just so cold then am too warm then it’s chest pain and shortness of breath. Drink 2-3 litres of mineral water and after a few days you will hopefully feel well. Try no salt, sugar or dairy and if it works for you that’s great. I am certainly Hoping so. It’s the only thing that helps me. Let us know how you get on and i hope you start to feel much better soon. J😀
Oh yes thankyou, ill try that. I have Reynauds as well as Fibromyalgia .
Will try anything when you are in so much pain.....
Even Arsenic if all else fails.
Can't believe how bad this pain is, 😰😰
Even though I have it. 😰
Thanks so much for your Advice,
I really appreciate it. Gjkas x.
Bless you. Do you also take vitamins. I have tried ashwaghanda, serrapeptase and Manuka honey. Try each morning fresh lemon with boiled mineral water and Manuka honey. Followed by fish with lots of pepper as it has pain relief properties. It could be the food making you unwell. I tried to eat like a normal
Person for a few days as I felt I was missing out and had to crawl to bed screaming with muscle and joint pain. I have paid a fortune on the best foods and vitamins it’s the only thing that stops the pain. I of course fall off the wagon and cheat but within hours my fibromyalgia, asthma and reynauds all flare up. You could be very sensitive to anything and everything. If you can get rid of aerosols, cleaning stuff and try only bottled water preferably in a glass bottle. I went for tests a few years back and was told the water was highly toxic for me due to all the crap in it. If I go out and have a coffee I am so unwell. I was told Sugar leaches calcium from your bones and it increases pain. I really hope your feeling much better soon. Try going for a steam bath or try again with magnesium salts in your bath. Avoid bubble bath and anything artificial on your skin. I only have pure coconut oil. Avoid bread, wheat, cakes, biscuits and try gluten free. It’s shocking you can’t eat what everyone else can but you will see a huge difference. I ate a chocolate bar last week and as a result was in bed for 3 days. Don’t have any alcohol 🍷 god it’s awful as I love a glass of wine or gin. Keep a diary and you can find out what’s making you worse. Am so sorry you have reynauds and fibromyalgia as it’s awful. Wishing you a great week. Take care. J. 😀
Hi Jeromicus, No i don't take vitamins ,wouldn't know which ones to try. I have so many health problems that the Doctors don't know what to do with me.
So fed up with it all.
I'll tell you some of the problems that I have.
2 Heart Valve's that aren't working, Surgeon won't do a replacement because he said that I wouldn't survive it. COPD, only the right lung working,Angina, Asthma.
Chronic Fibromyalgia, Rheumatoid Arthritis, Osteoarthritis and Osteoporosis, have had bones taken out of both hands in the past. Was taking Methotrexate for the Rheumatoid, good for the pain, but it messed my blood up. So had to come off them and was given Leflunomide, but they made me really ill and ended up in Hospital .My Orthopaedic Surgeon wants to do a Complete Wrist Replacement ,but when I told my Pain Management Doctors,
they said that they had never heard of any other of their other Patient's having a Complete Wrist Replacement and in no way was i to have it done .But I'd already made my mind up about that anyway.
I also have a 16 cm Haitus Hernia, an Umbilical Hernia, Diverticulitis and I.B.S. When I was in Hospital a few months ago for a suspected stroke, they did a lot of Scans,but i was also having a lot of pains in my Tummy and they decided to do an Ultrasound, then an MRI and after that a MRCP SCAN with contrast dye.
Well anyway, then they came back to see me and told me that they found that I had an Enlarged Liver, Blocked Bile Duct, Cyst on the Pancreas and Gallstones I couldn't believe it. Just told them that I want to go home. I told them that my Mum had all those things. They asked me what the prognosis of my Mum was, and I told them, PANCREATIC CANCER and she passed away 6 months later. Then the young Doctor came really close to me and said ( Yes well this is why we need you to see a ONOCOLOGIST or GASTROINTEROLOGIST as soon as possible. ) I just said again ,yes okay then but I'm going home now.
So I came home, but since then my Liver have gone down and my Bile Ducts seem to be clearing.
I have to go to EBBW VALE HOSPITAL next Monday to see a Gastrointerologist Consultant.
S hopefully I'll be able to get some answers.
You see, this is why things are getting really hard for me to cope with. All the Doctors tell me that I am so complex it's unbelievable, that i have a very high pain threshold.
Well I used to have but I don't think I can go on like this much longer ..
Thankyou for your kind words and advice. Gjkas. x.
Jeromicus I'm with you on that,, I will add that it's probably not just the fact that the things are in the tins or packets,, but the fact that there is problably gluten containing serials in there or dairy products,,, I also find soy tends to get me going.
I to am on a totaly fresh diet which is totaly gluten and dairy free,, infact almost totaly grain free and I also stopped all animal flesh. No tea, coffee lemonade No quashes and no sugar or sweeteners. No Cakes or Buiscuits.
Ocasionaly as a rare treat I will have a slice of GF bread with a little coconut oil salt and home made jam,,, but it is a very rare thing perhaps once or twice a month and I just keep one of the small GF breads in the freezer for that rare treat.
It's amazing how you adapt and really start to look at what you eat and what it is.
Most of my diet is now fresh fruit and veg organic were possible.
Fresh is best
Eating fresh basil may help open up airways look on web and it will tell you it's best properties may help with breathing
Thanks Eileen, I'll have a look on the Web. It's really stressing me out. I appreciate you getting back in touch with me. Gjkas.
That the way fibro gets you,,if it's not one thing it another and the Drs never seem able to give guidance or even aknowledge the problems as part of fibro,, like the breathing problems,, you lie there feeling you can't breath and wondering what is going on,, why can I not get a breath into my lungs,,, there has to be something more than fibro wrong with me,,if fibro had commonly associalted breathing difficulties the Dr would know and say to put me out of my misery. But they don't and when you mention it it's like they are totaly perplexed,, which dose no favours to your stress and worry.
I just don't get the attitude.
Oh Ray, i really do wish that they'd put me out of my misery, HONEST.
I Know what a lot of my Health Problems are. 😥😰
The Doctors have actually told me that I am so complex, they just don't know what to do with me anymore.
I'll tell you some of the things that are happening.
I have 2 Heart Valve's that aren't working properly and no Surgeon will try to do a replacement because I wouldn't survive it.I have COPD, Asthma Angina. Rheumatoid Arthritis, Osteoarthritis, Osteoporosis, Raynards Syndrome..
A 16 cm mixed Haitus Hernia, Umbilical Hernia, Prolapse, Ive had 2 bones taken out of both hands because of the Rheumatoid. Now they want to do a Complete Wrist Replacement,ive never even heard of one of these before. I told my Pain Management Doctors about it last time I saw her and she told me. not to
No Way, it's a very complicated process and she said that I wouldn't handle it,.But id already made my mind up NOT to have it done.
Then a few months ago I was in Hospital for a Suspected Stroke, but I was also having really bad stomach cramps. So anyway, i had an ultrasound then i had 2 different MRI Scans then a MRCP SCAN.
The Doctors came back to see me and told me that they found that i had an Enlarged Liver, Blocked Bile Ducts ,Cyst on the Pancreas and ,Gallstones. I couldn't believe it. I just said to them ( I want to go home. ).I told them that my Mum had all those problems many years ago. He asked me what the prognosis was and I told him, PANCREATIC CANCER, She passed away 6 months later BLESS HER.
Then the other Doctor came closer to me and said ( Yes, well this is why we need you to see a Onocologist or Gastrointerologist as soon as possible.) I said okay, but I want to go home, and that's what I done.
I rang my Husband up and asked him to pick me up and take me home.
Since then my Liver has got a bit smaller and my Bile Ducts are clearing. I have an Appointment at EBBW VALE HOSPITAL next Monday to see a Gastrointerologist Consultant. I hope i can find out then what the hell is going on with me.
I'm not going on all the time like this much longer Ray.
Ive bloody well had enough now.. .
This is what I mean. There's so many things going wrong with me.
Well the Doctors in the Hospital call me their Nightmare or Trouble.
Not Nasty or anything like that,
Sort of joking
Well Anyway You Take Care,
Gjkas .
Gjkas,
Dear lord!
If I were you I would not be waiting,,, low fat vegan diet and no gluten,,,
Srart looking at some of Dr Neal Bernards stuff
The cold is what really makes my pain excruciating. I also have times where I’m shivering and shaking because I’m so cold and the next minute I’m drenched in sweat and need to strip only for it to go round and round for hours on end- exhausting! When I’m feeling cold, I run a bath and put some cbd oil in there. I want to give Epsom salts more of a try but they did nothing for me from what I could tell either. I have to sleep with an electric blanket on over night and that really eases the pain of a cold bed but I also have a fan right by my bed so I can keep my body warm and eased but not overly hot, really recommend giving that a try if you think it could help especially if you find yourself needing to lay down and rest during the day a lot too x
Hi ,.i used to Love a good old soak in the Bath. But for some reason as soon as I get in the water the Pain is ACTUALLY WORSE. It's like every nerve in my body jumps into action.
I scrub myself like a Maniac so that I can get out as quick as I can.
My Husband bought a bath like a Jacuzzi, thinking the bubbles might help me.
NOPE. Just makes things worse..
Not safe in the Shower. I keep passing out. My Husband helps me in and out of the bath,because im just not safe.
I know that a lot of people with Fibromyalgia can go to bed and rest to ease the pain. But I can't because the pain just gets worse.
So bloody fed up.
Anyway You Take Care Of Yourself x.
Its horrible isn't it and I feel for you . Understand about central heating being too much . I personally use heated wheat pillows ( I have 3 haha) . I heat these in micro wave and are great to soothe shoulders ,my jaw , elbows, knees ,stomach ,neck basically anywhere .I think the weight helps as well as as full of seeds ,can mould round where its worse. Plus I have a light blanket over my quilt .
The pain killers are hit an miss and baths are great when you energy. I am often throuhghout the night , reheating these wheat pillows ( u can srprinkle them with lavender oil . ( I got mine in Wilkos , Savers and John Lewis , I love them x
Hi ,i already use the wheat bags. Yes they are good. All you can hear all day in our Kitchen is bing ,bing The microwave warming my bags up..I take 3 warm wheat bags to bed with me and 1 out of the freezer to put my hands on. I have Rheumatoid Arthritis in both hands which are very painful
I used to Love the bath. My Husband bought a small Jacuzzi bath, thinking that the bubbles would help
BUT THEY DON'T !!!!!.
In fact i can't wait to get out of the bath now. Even the water hurts my skin .
THE Neurologist said that i am Hypersensitive to, clothes, water ,heat ,cold ,light and sound He told me that my body has it's own temperature gauge. Oh it's really horrible.
Years ago I used to buy doll's and make Victorian clothes for them. So that's what I am going to try and do now ,something to help take my mind away from the pain a bit Not working very well, but I'm going to get it finished Trouble is my hands are so bloody painful .
So, FED FED. FED up with myself.
Wonder when it's gonna all end.
Thanks Jimmyshoes for your help & Advice .If you come up with anything else..Please get in touch.
🙏🙏🙏Praying for help. Gjkas x...
Goodnight Godbless Everyone .
Hello there and sorry for late response, I had had a mixed week of being in bed and also swimming . 2 whole nights with zero sleep but I am not letting this get in my way. My friend said how lovely I looked so zero sleep it is then haha .
Got a pip review to complete yippee ,cannot deal with this as words are missing and hands are stiff .Remembered a service that will complete form for £60 so I am going to invest in myself .
I personally try to avoid any conversations about pain in my head or with people as it makes me sad.
It is great you are sewing and I too, love to sew and make tops and skirts when o can fr sister,mum and myself .Ive managed to jam up my lovely machine and am focussing on trying to get it back to sewing just a line of running stitch tomorrow to complete this fabbo dress I want to wear.
Maybe try the bath again as you know that this fibro ,differs from day to day and hopefully it might bring you comfort.
Have a brilliant rest and may need you to get my machine to work haha .
lovey to swap notes with a fellow lover of sewing x
Oh yes I love sewing .my Hairdresser came to my house this afternoon and she saw the doll that I had just finished making the dress for. She kept going back to look at it.
She said that she'd never seen anything as beautiful and unique as the one that i had just done..
I love the Victorian style dresses, The doll has a really full petticoat, to help the dress to stand out, also long white Frilly Bloomers .A Hat and matching Bag..The Doll is 30 inches tall and I have it on a stand....
It took me a couple of months to do it all,,BUT IT WAS WORTH IT.
My Husband bought me the doll for our 25 th Wedding Anniversary. That was over 30 years ago.
I remember about 20 years ago, we went to a NEW YEAR'S EVE PARTY and everyone wore Fancy Dress....
Well my Husband went as AL .CAPONE and I went as his MAUL.
I made my own Flapper Dress, with the band that went around the forehead and the matching bag.
Ive always loved sewing, even when I was in School So my MUM & DAD bought me a hand Singer Sewing Machine for Christmas and i started to make my own skirts etc.much cheaper than buying them.
LOVELY, LOVELY ,MEMORIES.
I wish I could go back to the
GOOD OLD DAYS.
Before all the pains started up.
My Husband bought a Jacuzzi type bath for me. Thinking that the bubbles would help ease the muscle
Pains. BUT IT DOESN'T...
If anything they make it worse.
But we don't know whats going to help until we try.
OOOH, im sorry youve jammed your sewing machine up, I wish that I could. get it up and running for you again. Just thinking..Are there any sewing machine shops near you.
Because you could perhaps take your machine there and they would unjamm it and give it a service.
Be just like new. I think that when we are in a lot of pain, we need something to try to keep our minds off things. I know that sometimes we can't. But we all need something to stop our brains going to places that they shouldn't be going to
AND OURS ARE SEWING.
Hey Jimmyshoes, keep in touch.
I might not be able to answer you straight away. Will be going in Hospital again soon. But you can tell me how you're getting on with your sewing. Even if it is only just running stitch HAHAHA. Thats all you need for sewing most things anyway .
YOU TAKE CARE OF YOURSELF. 😊.Gjkas x.
Just something you may want to try is a high dose CBD bath bomb, I have heard that they are pretty good for people with Fibromyalgia
Getting out of bed and getting going
Still Getting There
The pip assessment 
Fed Up - Is this normal?
