Is this typical of fibromyalgia - Fibromyalgia Acti...

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Is this typical of fibromyalgia

Archie1977 profile image
23 Replies

I just want to see if this sounds familiar to people suffering fibromyalgia.

So I felt pretty damn good from Thursday lunchtime to late last night, then out of nowhere I got this horrendous stomach pain which didn’t ease until I took cocodamol and have woken this morning feeling like I’ve been run over by a bus... everything hurts again and still got a niggling tummy ache.

I was so pleased I was feeling v little pain and discomfort, then BANG hits me like a tonne of bricks.

Is this typical of fibromyalgia?

I am on amitrypteline for widespread pain.

Thanks x

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Archie1977 profile image
Archie1977
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23 Replies

Yes, I'm afraid so. Do you have other conditions too? I have many conditions causing me pain? Do you manage to get some sleep? I have an hour or less due to pain. Please take care Lynne

Archie1977 profile image
Archie1977 in reply to

I have scleritis, piercing pain in my shoulder-chest-back area twice a month for a few days.

Tingling/ numbness in my fingers.

Waking up in night( improving- normally once now)

I feel v tired and slow which is annoying as I have always been physically active and sporty.

Seeing rheumatologist again 18 feb as she has ruled out the RA/ lupus and cancer.

Last time she didn’t think it was fibromyalgia either so what the hell is wrong with me?

I cut gluten out of my diet too!

Bobbassett profile image
Bobbassett

Sorry Archie but this fibro is a sneaky so and so; it leads us into a false sense of security . Out of the blue, some pain abates, we’re not quite so exhausted and hope springs eternal ......

And then wham! That 49 bus comes from nowhere!

The unpredictability of this condition never ceases to amaze me. If I overdo things I can expect ‘pay back time’- but to what extent, who knows?

We’re all advised to pace ourselves in order to reduce the knock on effect of ‘doing too much’ - but how much is too much?

Unfortunately, we each have to find out for ourselves : it’s all ‘trial and error’

I hope that as the day goes on, you will feel better than now. The mornings are the worst time, I find.

Take care

Jan x

in reply toBobbassett

Hi

How are feeling this morning?

You are spot on. I have fibromyalgia, costochondritis, gastritis, IBS, diverticulitis, spondylitis, sciatica, degeneration of the facet joint, diabetes type 2, under active thyroid, Nash (non alcoholic steatohepitis caused by meds from my drs over the years) retinopathy, . These all cause me pain which is why I only get one hour or less sleep per night. Please take care. Love and hugs Lynne xxxx

Bobbassett profile image
Bobbassett in reply to

OMG Lynn! I have 6 of those but no wonder you struggle so much with all that lot!!

I hope you have the best day possible

Jan xx

in reply toBobbassett

Aww, thank you. How are you feeling today? Love and hugs Lynne xxxx

Bobbassett profile image
Bobbassett in reply to

Hi Lynn,

Truthfully, my day started badly with lots of myoclonic jerks and pain.

As ever, I tell myself that I’ll be a bit better in the next half hour or so, when the meds kick in. Then in the next hour and the next .......

Just to reach a certain level of mobility and pain reduction keeps my optimism alive.

I will never join The Pity Party Lynn and I strongly suspect that you won’t either.

Keep smiling 😄

Jan xx

in reply toBobbassett

Thank you. No, I won't. I always think there is someone worse off than me. Yes, I will keep smiling 😊 love and hugs Lynne t

Archie1977 profile image
Archie1977 in reply toBobbassett

Going back to my original post I’m guessing what I experience is what you all experience too. No warning sometimes and BANG another crazy pain. My tummy pain is quite new but a very deep tummy pain- again is this normal?

Also as mentioned before if all the nasty illnesses have been ruled out by a rheumatologist... then what? Do they just diagnose you with fibromyalgia and send you on your way- it’s frightening as I get the feeling some doctors/ osteopath/ rheumatologist don’t believe in fibromyalgia???

I’ve suffered for years but only recently getting it all put together and just want to know how I can live a normal life. I feel like a guinea pig with all the different drugs.

The first time I saw the rheumatologist I felt pretty good and range of movement in my joints was good. Today and other days if I was seen it would be a different outcome. How do they diagnose such a condition if only see you once every two months and you feel ok on those days.

Sorry for long message- I’m just totally confused and fed up with how I’m feeling x

Bobbassett profile image
Bobbassett in reply toArchie1977

Good afternoon Archie,

Don’t ever worry about the length of your posts.

We have ALL been where you are and totally understand.

One of the common complaints associated with Fibro is IBS, (irritable bowel syndrome). The symptoms are stomach crams/pain, bloating and an urgency to go to the loo. The bowel movements can fluctuate between constipation and loose motions.

However, your pain could be caused by a multitude of reasons. Please don’t make the mistake of putting everything down to your Fibromalgia.

It would seem that whenever any of us present with additional concerns, we just lump it all in and I have to say that some healthcare professionals are guilty of the same.

Go to see your GP if you are concerned.

On this site so many of us are what I call Imperfectly Perfect lol !

Given time you will discover your new normal. The support you will get here will help you . Just ask. No question is too daft. Someone will have had the same issue/concern as you.

Take care

Jan x

Archie1977 profile image
Archie1977 in reply toBobbassett

Thanks I seem to be at the docs every week at moment.

I wonder if the tummy pain could be the amitrypteline as it’s tarted since taking this drug for widespread pain. It’s the not knowing and unknown that is frustrating.

Take care x

Cathjamesandmatt20 profile image
Cathjamesandmatt20 in reply toBobbassett

Hi jan

Wow I’m kind of new to fibro and wondered why the hell I get huge twitches and sometimes it’s like an electric shock through my whole body, chest outward. Then it can just be my leg arm or head just jerks for no reason. I had no idea what that was called til now!

I have a huge list for when I finally see a neurologist and this is going on there for sure. So thank you 😊

Cath xx

Bobbassett profile image
Bobbassett in reply toCathjamesandmatt20

I’ve been put on patches containing dopamine, (usually given to treat Parkinson’s disease)

It helps to reduce the jerking and twitching and the pins and needles/ ‘lightening’ flashes anywhere in the body.

On the funny side, I have one of the common side effects:- OCD.

You should see my shopping trolley; it is arranged like a jigsaw puzzle!

Lol 😂

My cupboards and household goods are all perfectly aligned or symmetrical.

I’ve always been pretty tidy but now....

Don’t anyone dare move anything 😂😂😂😂

Got to see the funny side, haven’t we, or we’d all go totally off our rockers !’

Take care and as The Monty Python team sang,

“Always look on the bright side of Life”

Jan XX

luckylou52 profile image
luckylou52 in reply toBobbassett

my husband would love it if I got that as I am the most messiest person he has ever met. I was only diagnosed with fibromyalgia because I worked with rheumatologists at the hospital. I hate it on the days when I am in so much pain and am so tired. Probably doesn't help that I am going through the menopause!

1499 profile image
1499 in reply toBobbassett

Exactly! I can certainly agree with you Bobbassett it is one weird condition. Pace yourself is all we hear, and yes overdo it and we suffer for it with days in bed in extreme pain! hugs x

Yes severe stomache aches I get try not to take anti inflammatory drugs especially not on empty stomach best tablets for me are co codamol x

Archie1977 profile image
Archie1977

Thanks. I’m not on any anti inflammatory drugs as directed by rheumatologist and yes cocodamol help but I can only function normally taking one tablet otherwise I’m on another planet!

A real deep painful tummy ache which is new to me x

Hi Archie am so sorry your so unwell do you keep a food and symptoms diary as that can help you. Have you got gerd or gord. Have you been to your drs to discuss your symptoms. It could be the fibromyalgia or there could be another issue going on. If you have a sympathetic dr I would talk it through with them. Write down how long it’s been going on for and also look at the medication you take as it could be reactions to what you take or look at your diet as this could be a trigger. We have to be like a detective trying to figure out what’s wrong I would explain to both your dr and any future specialists in a bid to shed some light on what’s happening to you. You need to know is it linked to your fibromyalgia or is this a new condition. Let us know how you go on and try and see if you had any other symptoms at the same time as the horrendous stomach pain. Keep us updated and I hope today is good for you. J😀

NDStrong profile image
NDStrong

I too have recurrent scleritis and episcleritis for about 20 years. Woke up with it this morning again. What are you using to treat that? I developed early onset cataracts from all the steroid drops over the years.

Archie1977 profile image
Archie1977

I’ve been on steroid drops pred forte for another month and now have to come off it totally again and hope it goes away on its own due to risk of cataracts and glaucoma- I don’t know why it flares up- I was first diagnosed with this about 2 years ago.

Some days it’s almost clear then comes back in my other eye and keeps alternating R and L eye. Strange and at times it hurts and other times it just looks awful but no pain- don’t know what caused it?

Callyv profile image
Callyv

I gave ibs and frequently get tummy pains, sometimes really painful especially after a bout . It’s a relief when they move as then I know it’s wind which I think is the cause most of the time. I try to avoid foods that cause it such as brassicas and too many beans. If I’m not taking meds I’ll use charcoal tablets but otherwise windeze or deflatine help also confirming my wind diagnosis.

LadyJoro profile image
LadyJoro

Yes especially if you have been doing lots while you were feeling good

Pat9 profile image
Pat9

Yes it does sadly this is just how I feel today hit me like a steam train and I have been diagnosed with this awful illness sorry you are suffering too 😢

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