Still waiting to be diagnosed,but doe... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Still waiting to be diagnosed,but does anyones body jerk also besides the pain ect? and do you shake? im new here..Thank you for your help.

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jamieann
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hi and welcome to the site hope you get alot from it i am sure you will i do jump not all the time yesterday i was doing it and today i am but by tomorrow it may go then come back it varies really so your not alone have you been to you r gp yet? i went and took a list of things that i had wrong with me exactly how i ws feeling and she said she was convinced i had fibro and then referred me to rheumatolisgt who confirmed that i did good luck love diddle x

jamieann profile image
jamieann in reply to

ooppss,,not sure if i replied or awnsered my own question..lol...i cant remember what i hit to reply..but just incase im under here..LOL !!!

jamieann profile image
jamieann

i went to a Neuro. an they only said they do not feel i have MS..an said they wanted to take it slow so they dont overlook anything.i too brought a paper on everything i was goin through.an They gave me Neurontin to take for the pain,that went horrible,i was amess from it.it made me high as a kite,even at the small dosage,now they have me on Amatripalyne 30mg at night..been takin that for acouple weeks.an now it seems the pains comin bak slowly.but im still shaking an jerking.numbness in fingers,memory is horrible. but yesterday scared me,im kinda used to the shaking even though it gets frusterating,an the jerking.but i was laying there an my chest was jerking forward,pulling my top of my body forward,it lastd about 1 min. stopped for acouple seconds an did it again lasting same amt. of time. and this dizziness is terrible...thank you for your welcome here and help...

jamieann profile image
jamieann

whats a gp? lol..sorry not used to all this yet..:)

daffodilhappy profile image
daffodilhappy

Hi there,Yes I get them especially when I am lying in bed.I had one occasion when I was knitting and I jerked and one of my knitting needles flew across the room,luck was it no one was hurt but my husband was shocked,so was I.

Try not to worry about I fine that helps.

jamieann profile image
jamieann in reply todaffodilhappy

Thank You, has your chest ever jerked forward like that?? or have you heard or it being related to Fibro?

bruiser profile image
bruiser

Hi the gp is your doctor general practitioner the spelling doesnt look right but sorry for that good luck xx

jamieann profile image
jamieann in reply tobruiser

ohhh...Duhh..lol...i shoulda guessed that one..lol..thank you !!

millyjay profile image
millyjay

Hi I have only just joined the site too. I was diagnosed with FM last year and to be honest was relieved just to have a label for what was happening with my body, I went to bed one night and woke the following morning unable to get out of bed, the pain was horrendous and the shakes were even worse. (the only way I could describe it was that the body snatchers have been in during the night and taken my healthy fit body and replaced it with that of a very unhealthy 90 year old). The specialist gave me some wonderful advice, 'the good news is we know what you are suffering from, the bad news is we don't know why and there is no cure' thanks doc... the good news is 2 years after being affected by this I am still here, still suffer, still have tremors and jump especially during the night or when I am trying to relax, this does affect my sleep and does cause chronic fatigue, but have come to terms with it and I am finding ways of managing the pain etc and I am back in work even though it is only part time and I have to have a day between shifts to recover :-).. take care and hope this helps a little, you have a lot to come to terms with and it is not an easy road but if you stay positive and take it one step at a time you will survive it if not conquer it xx

jamieann profile image
jamieann in reply tomillyjay

Its very scary not to know whats going on with your body.Ive been shaking for years.Thinking it was just my nerves.Due to a horrific relationship of 13yrs...an then almost 2yrs ago laying in bed my legs started to jump an felt like i had to move them.that went away for months.it started back up again almost 1 year ago.but it was in my legs an arms this time.was put on Klonopin for it.an was diagnosed RLS...Then like you said out of nowhere the pain started..in my legs.i figured it was the RLS..It started moving so quickly,my legs were in terrible pain,arms,hips,lower back,shoulders,an it seemed to get worse as the weeks went by.Then dizziness started,memory is horrible.body parts jerking.now as of yesterday my chest is jerking forward and this is all happening so fast.Ive been to a Neuro. 1 time.an called them today to see what they say.I have no clue as to what i have..i look at Fibro. an it seems like i have it.But i try not to self diagnose..ughh..my next appt. isnt till june.Thank you for your help,I try to stay positive....

millyjay profile image
millyjay

@ jamieann, where do you live? I think that makes a big difference in diagnosis and treatment x please do stay positive though as it can really get you down and I know at least one person who totally had enough as when you have gone from being a very active person to someone who is in constant pain .... well what can i say??? I am staying off meds, i have codeine which i take when i really cant handle it.... otherwise natural remedies x

jamieann profile image
jamieann in reply tomillyjay

USA...Ive noticed most people on here are from the UK...Well,The Neuro. called an they said they want me to go from taking 30mg of the Amitriptyline to 20mg of it at bed time instead,saying that should help with the dizziness.And for me to call them back on the 30th with any changes..an im waiting for her to call me back after letting the Dr. know about the new chest jerking, ect...ughh..I didnt know it made a difference on where you live.i did look to see if there was anyone near my area,but it said none.I feel bad for you going from being active to the pain,like youve said.I wish the best for you. and am glad to have met you on here,ive just been reading everyones questions...lol...but when my chest was jerking/pulling forward i really got scared..But i try to stay positive like you said..and thank you for your advice..

jamieann profile image
jamieann in reply tomillyjay

@millyjay i forgot to ask where are you from?

gloglo profile image
gloglo

Do you know i suffered this for ages before i was diagnosed. while i would be lying in bed just as i was bout to does off my leg or my arm would suddenly jerk and would wake me up it would be really annoying as i would have found it difficult to get to sleep in the first place and then as a'm about i would be wakened. It was only of late that i found out it was part of the Fibro i get it even now when i am awake but more in my right shoulder and arm. i'm from the midlands in the UK anyone else near me?

jamieann profile image
jamieann in reply togloglo

@ gloglo...Same happens to me,,its so annoying..ive noticed alot of people saying they werent diagnosed for years.Thats what im afraid is going to happen to me.I have the jerking in both legs and arms,an hips/butt if im layin on my belly.also shoulders...But havent seen anyone post about their chest jerking forward though.it happened twice in a row to me the other day lasting 30 seconds to almost a minute,and about 3 seconds inbetween.That scared me. This is horrible as im a single mom.and im 35yrs old.ughh..but i feel good today so far.your from the UK ...I see theres alot of English Bull Terrier dogs there...i LOVE them !!! they dont have them around here,,but i have one i traveled to get...LOL...Thinking positive = )

jazher profile image
jazher

Hi jamieann,

Welcome, this site is really good and there are some lovely people on here. :)

I get jerks all the time, i take gabapentin and amitriplyn and they are my wonder drugs.

My tremors were so bad in november, it was horrible. I couldnt walk, carry a cup of tea, i was so dizzy the only thing i could do was lie in bed, this went on for about 6 weeks. I went to a neuro for a mri but it came back clear, so it was a mixture of things that were making me like that.

I jerk all the time, my legs will just kick out for no reason and every muscle twitches. The weird one is that my stomach muscles twitch, that it feels like a baby is moving, lol.

I beleive that it can happen anywhere on your body so it doesnt suprise me that it happens with your chest.

It took me years to get proper diagnosis.

hugs, kel xxxx

jamieann profile image
jamieann in reply tojazher

Thank you jazher...first ive heard of the stomach one..lol...My neuro. just lowered my dosage yesterday.sayin she wants to see if thatll help with my dizziness.so we'll see. but yet my legs were killin me last night.so the med. started to wear off anway so lowering the dosage has me all nervous. but i do what they say and hope for the best. i understand they have to try different things to see whats going on. so far im ok today.I just wish they would tell me what i have though.itll make me feel alittle better. I think i have fibro. an she mentioned it at 1st appt. but didnt say i def. had it. but sometimes with the way my body moves im afraid theyll tell me its Parkinsons..this is a very scary thing to wait for an awnser to..I always feel like i should be ending my letters with some kind of mark,cause all of you guys from the UK do the ...xxxx things .lol..here we dont do that. LOL...so maybe ill start leaving a heart.. <3 = )

jazher profile image
jazher in reply tojamieann

HI jamieann,

You dont have to leave xxxxx lol, Do whatever you would like to do lol. Thats the best thing about this site we can say what we want, and need to. Its good for a laugh, a rant, a good cry. Whatever you are comfortable with. :)

It is always scarey not knowing what is going on and a gp told me that she thought it was fibro 4 years ago, but i always knew there was something else, so i pushed for years. I finally got my diagnosis last month,

Fibromyalgia,

CFS/ME,

Hypermobility syndrome, which apparently made my legs walk like they did.

Low on vitamind and calcium, underactive thyroid due hashimotos disease and,

An auto immune disease that means i cant absorb b12.

So please keep pushing as you know your body, Do you have tendor points?

hugs, kel xxxxx

sassie12 profile image
sassie12

Hi i'm from the midlands too, i have arm and leg jerks increased more recently my head shakes and has got worse like my neck muscles want to spasm all the time. Very bad pain in my left arm & shoulder, pins and needles, pain across my ribcage and under my breastbone at min so i can't breathe well unless i sit right up. restless legs, headache, dizziness, brain fog, lethargy, jaw pain probably alot more ive just been given dyclofenic! i do have amitryptolene from previous visits to the doc but they will not put 2 and 2 together just see the separate symptoms. Driving me crazy!

Larke profile image
Larke

I have the same strange body jerks too. Moreso when I was on Tramadol. The word for this body jerk thing is called myoclonus (en.wikipedia.org/wiki/Myocl.... It is VERY common, so don't stress yourself needlessly. As you can see in this post alone, many report having this as well. As for a Fibromyalgia diagnosis, it took nearly 1 year for me to get one in Canada. I live in the Toronto, ON area.

I also wanted to say, knowing full well how awful it is to not have a diagnosis yet, is to ask "What if I have Parkenson's" etc. Flat out ask your doctor and get the relief from him/her that they do not think you have it. or they will test you for it, if they think it necissary. Do NOT self diagnose by reading symptoms online, you will just make yourself more stressed out. If it does bother you, ask your doctor that's what they are there for. If you don't get an answer, keep asking! Or change doctors.

Sunshine and smiles,

Shannon

livingwithfibromyalgia

@LDYLARKE

rubycat profile image
rubycat

I have body jerks and shaking aswell. Sometimes my whole body shakes and I have to lay down and wait for it to pass.The worst thing that has happened due to my shaking and jerking is , the other day I was serving up a meal. I was carrying my daughter's plate into the dining room when my arms jerked and the whole plate of food flew through the air and landed upside down on the table. We laughed about it afterwards but my husband couldn't understand why I was so upset.I just feel so stupid sometimes as if I can't do the simplest thinds. Does anyone else feel like this?

kathyknowles profile image
kathyknowles

jerking!!i had this problem for years and the doctors put me on Gabapentin! which is for epilepsy, i only take it at night which is my worse time for the jerks!when i try to relax!! i am not epileptic !! and it does help me !!

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