Did u guys get attacked with the fibr... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Did u guys get attacked with the fibro or slowly progressed symptoms ?

55 Replies

So 11 months ago I was attacked with neck pain electric pains in arms stabbing in chest I even wore neck brace it will be interesting to see if u lot got attacked with it at once or slow progression I started having mad sugar cravings in the night to xx❤️

55 Replies
Patdoyle profile image
Patdoyle

Mine started slowly with joint pain and exhaustion and fatigue. Then other stuff like the tingling kicked in as the weeks went on. That was about 10 years ago. Still get new symptoms.

in reply to Patdoyle

Really 10 years bl***y hell I'm slowly starting to except it but the stabbing chest muscle pain is so scary makes me feel like I'm having a heart attack xxxx and the fast heart it the worst symptoms xxx

Julesubu profile image
Julesubu in reply to

Hi had my fibro for many years but just started getting chest pains and palpitations etc when started perimenopause. Not sure if this affected my fibro or were just hormone related symptoms. Had a barrage of tests and was fine but go see your doctor just to be sure.

in reply to Julesubu

Thank you yes I've been so many times waitting for Rhumatologist thanks Hun xxxx

Blimey sounds like me I paid 50 for deep tissue massage the next day I couldn't walk the *** made it 100 times worse I Diddnt no it was fibro and thought I was just tence after that massage I had electric volts going through me and really bad twitches never again although I find cupping good and not intense x

Alanna012 profile image
Alanna012 in reply to

Deep tissue massage makes it much worse in my opinion. Did it once and never again, took me weeks to recover. Felt great at the time though!

Dizzytwo profile image
DizzytwoModerator

Hi, I have had it for about 35 years diagnosed 25 years ago and I can not remember having any of the symptoms you mentioned. I do get some of them now and again. But it has been a very slow progression.

in reply to Dizzytwo

It's strange how u don't get same pain I suppose everyone has it different xx

Entela15 profile image
Entela15

Mine started with pelvic pain, IBS and interstitial cystitis. After that the pain went to my back and legs. That was 3 years ago. Now I feel pain in every inch of my body. It travels, the worst pain is still back and pelvis.

I forgot to mention headaches and facial pain too.

in reply to Entela15

Yes I get facial pain and teeth hurt as well x

Patdoyle profile image
Patdoyle in reply to

Yes and I get electric shock feelings from my neck down my arms into my fingers

in reply to Patdoyle

Yes that's it pat I get the same xxx

Bird88 profile image
Bird88 in reply to

Mine started with facial arthamyalgia and within a year I was struggling to move. I still have new symptoms I went from running daily to needing a stair lift x

People say u get it from other things like diabetes Lupus arthritis I think mines from trauma my brains been in flight or fight response for so long I can only pin point it to childhood x also have prolapsed disc but that's not bad enough to cause fibromyalgia x

michaelf43 profile image
michaelf43 in reply to

Hi,

I believe mine started through stress when my dad died. Although i had alot of back pain that use to just come and go. But when my dad passed away the symptons got worse and to the point was laid of work on ill health grounds that was 3 years ago and still unable to work since.

in reply to michaelf43

I'm sorry to hear that greif has a terrible effect on us physically and mentally mine started in lower back had prolapsed disc thought electric pains in legs was siatica until the pains were in arms legs jaw neck I called ambulance thought I was having a heart attack at first x

bobbybobb profile image
bobbybobb

Mine was a slow progression. Aching joints, sore muscles, I had been tired for years then started with episodes of exhaustion. Then as time goes on you have other symptoms that appear. I don't believe it is a rapid onset disorder. xx

in reply to bobbybobb

Yeah I agree I had mental fog and lower back pain for years then after chronic insomnia it was bang one day like an explosion for me it all got to much xxx are you on meds that help u ease symptoms xx🙂

bobbybobb profile image
bobbybobb in reply to

I've tried a few but not suitable for me. tried pregablin recently but was sensitive to them. You have to try things to see what might suit you, there are many medications and therapies to try. xx

in reply to bobbybobb

Thanks Bobby Bob I will get there x

Dizzytwo profile image
DizzytwoModerator in reply to bobbybobb

Hi bobby, that's exactly how mine started. I do get many many more problems now but I'm getting older too. I agree I don't believe you wake up one morning and Boom you have fibro. I think it happens slowly over a period of years. That's why when you finally get a diagnosis you know you had suffered with it for many years previously. But thats just my personal opinion 😊

Entela15 profile image
Entela15

My brain fog is getting worse now that my mood is low. I notice my memory is very bad , I keep forgetting basic words in English. I have to ask, what do you call this in English? To think I used to teach English as a second language.

in reply to Entela15

Yes I can relate when I go shopping or stress dil places I'm confused and have to really try hard to think straight xxxx my insomnia is terrible x

Bronagh1980 profile image
Bronagh1980 in reply to Entela15

Forgetting very familiar words I've suffered a while although it's getting worse.

Edenstar profile image
Edenstar

Hey babes xxx firstly I hope you are having a “good” day as we all know we don’t get many lol xxx about two years ago I had severe anxiety attacks and I was on pregabalin and venlafaxine to try and control it xxx but I was still struggling so the shrink in his infinite wisdom placed me on mirtazapine which I took thinking ok I will try what I’m told xxxx after a week I was in a lot of pain all over my body after two weeks I couldn’t walk xxxx I went to the doctor who took me off them but was concerned as I was still in pain two weeks after xxx

I was then sent to rheumatology and had xrays bloods and ultrasounds across my body xxxx and it turns out that the mirtazapine kicked off a fibro flare and they are still debating if I have ms as my immune system is shot xxx so mine came on suddenly because of pills xxx

in reply to Edenstar

It's crazy I ain't it Hun I'm having an ok day I just come on here when I get pain to see if people can relate lol or go completely off my head !the worst for me is the stabbing chest pains they are so scary my fibro started with insomnia and panic attacks I never had panic attacks before this xxxx hope your getting sorted xxx push to rule out ms think u need Mri it's probably not tho as fibro and ms are similar symptoms x

Edenstar profile image
Edenstar in reply to

I agree I’m not worried about an ms result in all fairness xxx I’m not to bad atm as I’m on diazepam for my back spasms (they were b****y awful 🤦🏽‍♀️) but I’m hanging in there xxxx I’m always here if you need to chat xxx so just private message me if you want to let off steam or need a giggle xxx

in reply to Edenstar

Thanks darling really apreciate it Same to u whenever u need a chat xxxx were be warriors together 😂😂

Hi

I've had it for years but only diagnosed roughly 4 years ago. It seemed to be a slow process but then bang!! It's all over me but I do have many conditions which doesn't help!! Take care. Love and hugs Lynne xxxxLynne

in reply to

I was diagnosed with nerve pain due to diabetes roughly 6 years ago the pain was in my right leg mainly since then pain has crept up on me until I am all over in pain diagnosed with fibro 2 years ago lower back pain is very bad can't raise my arms above shoulder height can't walk far legs feel like they weigh a ton🙄

in reply to

Yes, I know what you mean. Pain 24/7 is no joke, it's horrendous. Thinking of you. Take care Lynne

in reply to

Don't know why it came to me! I didn't invite it but I guess we have to accept what we're given and make the most of it! I hope you've come to terms with your scan results and do try and get at least a little sleep 😘

in reply to

Thank you. Yes, I've got my head around it now. It's not much to ask, just to be pain free for a night.

How are you feeling tonight?

Take care Lynne

in reply to

Still awake and expect to be for a good while yet I ache all over but my mind doesn't let me settle down to sleep!

Yes, it certainly is!!

Maddy1974 profile image
Maddy1974

Hi :) I was treated for IBS and flu on and off for about 4 months. I then developed (as I thought at the time) a severe case of flu. The pain!!! I couldn't walk. I was hot and cold, hot and cold. That was 15 years ago. It never went away ☹️ Still have the odd good day, but mainly bad 😢x

in reply to Maddy1974

Hi maddy it's strange because one minute I'm constipated then loose I also get burning sensation in pit of stomach morning are worse I'm constantly going through out the day feels like I've got severe abdominal pain then it goes very odd does that sound like ibs ?xxxxx

Maddy1974 profile image
Maddy1974 in reply to

Yes it does sound like it. I take Buscopan when it starts. They work pretty quickly. Or drink warm water with peppermint oil in x

Progressive It was over 10 years before I was diagnosed.Symptoms possibly started in 1986 with Arthritis ,Around 1994 suffered from "Fibrofog"-poor memory,fuzzy head.Fatigue Joint.muscle pain.Diagnosed in 2005-progressively worse since 2011-but symptoms now match those of Pagets Disease of the Bone.

Catrob12 profile image
Catrob12

Hi there for me it started off with hip pain after an operation I had gotten done, suffered from IBS for years prior to this. The pain then traveled to my neck which they thought was a trapped nerve but it got progressively worse and and now the pain effects my whole body, I can crack every bone in my body whenever I move not sure if it's fibro related but it's so loud even my hubby can here it lol. Brain fog is the worsed I think as I hate not being able to remember what am doing or saying and i feel it makes me look silly and it can be very upsetting when am in class talking about something and then I forget what am talking about, luckily my class mates and lecturer are understanding and help to decode what am trying to say x

in reply to Catrob12

Bless you yes brain fog isn't pleasant at the best of times my bones crack and click as well specially shoulder blades x

Catrob12 profile image
Catrob12 in reply to

My hubby jokes that am the new mascot for rice crispies as I snap crackle and pop 🙈🤣 he thinks he's funny lol

Alanna012 profile image
Alanna012 in reply to

OMG please tell me about the cracking and clicking! I too call myself Snap crackle and Pop. When I told the Rheumy this she looked at me like I was stupid and said 'everyone's joints crack sometimes' in a withering tone, like I don't already know that. I'm talking all over chronic cracking and snapping. Sometimes it disappears then reappears. So good to see it's not just me!

Catrob12 profile image
Catrob12 in reply to Alanna012

It's just something that seems to happen to me my Dr and rheumatologist said it's nothing to worry about but it does get very sore sometimes my Dr said to just keep an eye on it if it gets worse then they will go from there x

Tootiepie profile image
Tootiepie

Hello Lauren1987, sorry to hear you are feeling so unwell.

FB is very strange and does not effect everyone the same. So although in my case my symptoms did increase and are still increasing ! I have not experienced what you are experiencing - but others might/will. If in doubt get symptoms checked out as they may be something elsE that can get fixed but your putting it down to FM.

in reply to Tootiepie

Thank u xxx

Backbone38 profile image
Backbone38

Mine was slow in onset, started 12 years ago with general aches and pains. Today it is almost unbearable. All over muscle and joint pain. Polyneuropathy, feet really bad. Undergone two spine surgeries the most recent this year, unfortunately nothing seems to help. We badly need a break to be discovered.

in reply to Backbone38

Oh definitely and docs need to be more aware do U get stabbing chest pain at all that's the worst for me x

Backbone38 profile image
Backbone38

Not in the chest but almost everywhere else. Across the shoulders, neck and both arms. Pain could manifest itself one day and then move somewhere else. Pain killers don't help anymore. We have to be able to handle so much, especially when the pain interferes with your sleep pattern. Good luck, Lauren, if you find a cure, please let me know xx

in reply to Backbone38

Lol thanks hunni if I do u will be the first well second after zoonie xxxxx

Alanna012 profile image
Alanna012

Mine started gradually. I noticed I was getting these red rashes all over. No pain, just these large red patches. They weren't itchy or anything. But they would randomly appear, stay for a few days then disappear. Then I noticed my eyes kept getting bloodshot, I'd have a permanent red halo around my iris - again no pain, no dryness. It would appear then disappear.

Then I noticed that if I knocked myself or fell down it felt more painful than usual. Then I sometimes had what you're experiencing, a random sharp stabbing sensation under the buttocks, or in my breasts or gums and sometimes a severe burning sensation in my legs.

Then I started to feel like my feet and hands were swollen, even though they weren't and my hands felt 'tight' to bend and opening bottles doing up buttons hurt a bit. Then I noticed that if I wore my normal heels, my feet were absolute agony to point of not being able to walk. I started to become very clicky in my joints all over, you could hear me coming. I started to become really tired and I noticed I couldn't tolerate physical exertion well and would flush really easily (I'm black so that was noticable) Then I got chronic sinusitis and nothing would help.

Then my allergies became really severe as if my immune system had just ramped up a massive notch. I ended up needing 3 years of immunotherapy because allergy drugs didn't help. Strangely I experienced physical pain all over if I came anywhere in contact with something I was allergic to. I mean walk into a dusty shop (dust mite allergy) and suddenly feel pain. Feel pain reaction to someone's perfume etc. Couldn't tolerate hotel rooms or the sheets on my bed or my mattress or bookshops. I phoned allergy UK twice and they had never heard of it happening. The doctor thought I was crazy. Why would an allergy cause you pain? Got offered anti depressants.

The crucial point came when I came out of a train station with my son and suddenly screamed because it felt like someone had literally taken a hot wire and lashed me across the face. My cheeks felt hot and I kept getting electric pulsing sensations. I went home and noticed I had a red butterfly like rash across my face. I thought it was Lupus, but as you probably experienced, all tests came back negative. After that day it all got worse, but luckily sinus is much better.

I went to the doctors a Gazillion times with all these symptoms before finally being diagnosed. They just didn't connect the dots. I read reports that Fibro comes on suddenly, but I disagree, I think if you think carefully, it hasn't, it's just the symptoms at first are barely noticeable or do not fit into a pattern, so you may have dismissed them. But think carefully. The stabbing pains are just a very noticeable symptom.

I do have hashimotos disease and I believe i had that untreated for decades so IMO I do think that was the catalyst as Fibro seems to appear with immuno illnessess or trauma of some kind.

in reply to Alanna012

Thanks so much hunni I really apreciate your reply I can fully relate to most of those symptoms when I am diagnosed I will feel so much better xxxxxx

Patdoyle profile image
Patdoyle in reply to Alanna012

I too get a butterfly rash on my face which comes and goes. It burns too. Tests come back negative for lupus.

Alanna012 profile image
Alanna012 in reply to Patdoyle

I'm not the only one then! (yay but boo for you its horrible I know). But I'm interested in this as it's a symptom not often associated with Fibro, but it looks exactly like the Lupus Malar rash. I even get raised shiny skin sometimes along with the heat. I think they are not really cataloging all of peoples experiences and physical symptoms of Fibro.

😄

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