Old 01-24-2017, 02:16 AM #1
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Default Fibro Opinions

Hi all,

I'm just here to see if anyone with Fibromyalgia have similar symptoms as myself. I've been living with Spondylitis (Arthritis) for 20-25 years. So basically long term pain and fatigue. Over the last few years I seem to have added a new and very long list of symptoms that I'm dealing with probably every day of the year.

6 Years ago I started getting night time jerks in my left arm, sometimes both at the same time or even full body. Normally when resting or when in bed.

In the last year this has become worse and is now happening throughout the day. Its normal for me to have a lot of twitching/jerking movement the second I get to relax. At the end of a working day my muscles are extremely tense, normally when I get to my car after work and sit down the arm tic movements start.

I have recently had four partial fits, after the last one I couldn't stop the sudden movements in my arm/body for a number of weeks. I never lost consciousness but I had no real control during the fit. For a few days i felt weak, slower mentally and had bad migraines which never happens. That last fit was over two months ago and everything is starting to calm down now.

And yes I have been to a doctor and my rheumatologist who were not helpful to say the least.

I have also been having extreme nerve pains, just random strikes in any part of my body. Sometimes if feels like a bee sting, a lighting strike, other times it feels like multiple needles followed by a deep drumming pain and other times it feels like the arthritic pain but no where near a joint.

My hands have been a problem, I'm an office worker and typing some days is nearly impossible by the end of the day. They always have a slight pins and needles feeling with a bit of random nerve pain and can feel hot high blood pressure, if that makes any sense.

My feet and ankles have a very similar feeling. Normally by the end of the day it feels like I've been on my feet all day.

In terms of general pain, I think it would be easier to just say my ears and belly button are never sore. Every part of me will have some pain during the day, joint, bone and just a blanket of pain over a large area is normal.

My sleep is fairly good but I can never really sleep in. I always wake feeling uncomfortable, probably due to the arthritis. Its extremely rare for me to wake up and feel refreshed. I need a lot more sleep than my family and partner, I'm generally exhausted by early afternoon even if I've spent the day relaxing.

Late afternoon I nearly always have a temperature. During the day around aircon I wear a jumper to keep warm. And I have earphones in to stop the waves of noise, people all around talking has never been easy for me.

I have always had strong responsive pain when it comes to prolonged touch. Say if my partner rests her head on my chest, after a minute or two I'm basically holding back a scream. If she rests her head on my arm it will instantly be numb and then painful. But in saying that my skin isn't oversensitive, some textures will feel like hot sandpaper but generally speaking I'm fine in that regard.

I get a very heavy feeling in my body when I'm tired, sort of like wearing a full body lead apron but that could be my AS.

I've been on a Vegan diet now for 6 weeks due to a liver LFT's problem. Another thing that have the doctors scratching their heads after lots of tests and strict dieting.

I have had previous bowel problems, with rather serious crones like symptoms but nothing diagnosed. I normally wake up bloated, there isn't anything that seems to trigger it that I can see. The diet has maybe improved it but by a very marginal amount.

I don't believe I have brain fog as described. If I'm stressed or super anxious then yes I definitely have problems getting my brain to give me words to say or sometimes I can't understand what people say at the start of a sentence but i'd guess its sort of normal. I do seem to be very stressed and anxious these days, thinking back a few years ago I didn't have anxieties at all.

Depression goes hand in hand with 20 plus years of Arthritis, I think that's to be expected.


Maybe too long but probably too brief to explain everything. It was the ticks/jerking movements that got me onto looking at other disorders other than AS. A day after the last fit my doctor was nice enough to ask me if I was a drug addict looking for muscle relaxants and has since ignored the problem. So as you could probably understand a see your doctor comment isn't what I'm looking for, just general comments about your experiences as a diagnosed fibromyalgia sufferer is fine with me
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Old 01-24-2017, 04:10 AM #2
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Default Re: Fibro Opinions

Forgot to mention I have tested positive to HLA-B27 Gene but I guess there's no relation to fibro.
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Old 01-25-2017, 06:43 AM #3
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Default Re: Fibro Opinions

Guess ill add some more recent symptoms. My muscles tense up during the day and after a while I notice that I'm exhausting myself by sort of fighting the feeling. Hard to describe, its like a subconscious reaction of muscles fighting each other to hold myself in a statue like state.

I can experience an extreme version that can be triggered. For some reason I can't play console games, sound stupid but if I pick up a controller in my hands, then look at the screen and start playing a game my neck will tense up to the point that I can hardly move it. Sometimes if I hold something in my hand in a slightly awkward way that will also cause the same muscular reaction in my hand. Another example would be just laying my head on a pillow, it can feel like my muscles are struggling to hold my head up.
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Old 01-30-2017, 05:32 AM #4
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Default Re: Fibro Opinions

Struggling to cook meals is a topic I can relate to. I loved cooking but now I get a build up of pain, if I take to long I'll be in too much pain to stand up for the rest of the night. I'm now cooking quick easy meals or recipes I can walk away from. My routine has been to cook and eat at the same time then when its ready I ask the family to serve themselves and I go to bed.

Its not pain from touching things or anything like that, just a back pain accompanied by loss of muscle control that just tightens. The longer I stay standing it quickly gets worse, if I don't take a break i'll hardly be able to walk for the rest of the night.
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Old 01-30-2017, 02:20 PM #5
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Default Re: Fibro Opinions

Yes I have all of them.i hurt all day long.i get painful hands and feet.i have very bad stiffness.full body.im in a flare right now ,and I'm wiped out .
It's hard,to keep going.everyday is painful.i often wake up jumping out the bed lol.like an electric shock.
Your not alone.and I'm sure if you stick around you will find some good friends to turn to .x
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Old 01-31-2017, 02:32 AM #6
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Default Re: Fibro Opinions

Thanks for replying, I was starting to wonder if i'd get any response.

The fact you get the stiffness is interesting, I didn't know that was a FM symptom.

At the moment I'm surviving ok, many years of practice lol. I'd say I had a very big flair up two months ago and it got me asking myself about what's going on.
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Old 01-31-2017, 11:21 PM #7
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Default Re: Fibro Opinions

I have the body stiffness in the morning and if I've been sitting or lying in the same position too long. I also have the fatigue where my body is just plain exhausted and has the "heavy" feeling you described; as if there is no way I can pick myself to move or do anything. I also have stomach troubles. I wake up bloated in the mornings and go from being constipated to cramping and having an upset stomach later or the next day. I suppose that's the IBS part of fibromyalgia. I also get frequent headaches and migraines. I have the pain sensitivity to touch.

Just a huge ball of fun of symptoms
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Old 01-31-2017, 11:21 PM #8
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Default Re: Fibro Opinions

I have the body stiffness in the morning and if I've been sitting or lying in the same position too long. I also have the fatigue where my body is just plain exhausted and has the "heavy" feeling you described; as if there is no way I can pick myself to move or do anything. I also have stomach troubles. I wake up bloated in the mornings and go from being constipated to cramping and having an upset stomach later or the next day. I suppose that's the IBS part of fibromyalgia. I also get frequent headaches and migraines. I have the pain sensitivity to touch.

Just a huge ball of fun of symptoms
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Old 02-01-2017, 05:23 AM #9
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At least migraines aren't a normal thing for me, normally headache free.
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Old 02-03-2017, 04:49 AM #10
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Default Re: Fibro Opinions

I'm feeling way better than a few weeks ago, I'm still getting new symptoms or at least once off events ATM. Stiff out of control muscles are still the norm and like you Brand mornings and laying in bed is always uncomfortable but a must, I need to rest away from everyone and try to settle down these days.

Yesterday I had the feeling you get just before sneezing but in my feet-ankles. It was like my feet sneezed, very strange I'm sure that'll never happen again.

I also had a localized electrical feeling in the side of my neck going up towards my ear , it was painful but not a muscular pain for once. It felt like an area of my neck was electrified and it was slowly spreading.

I was just testing out pressure points and pressed on my upper chest. I had a numbing sensation underneath my arm which travelled slowly down my arm into my hand. It lasted for some time and could be made worse if I just lightly pressed the same spot. Is that what's meant to happen when doctors do the pressure test thing?
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Old 02-04-2017, 08:33 PM #11
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Default Re: Fibro Opinions

Spoke too soon lol

Woke up with an intense sensation in both hands, I felt like jumping out of bed and putting them in ice water. I did some gardening yesterday and I'm assuming that's why.

I had the tic type muscular movements all night and i've still been twitching all day long.
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Old 02-07-2017, 05:37 PM #12
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Default Re: Fibro Opinions

I get them tics in my arms and legs.and hands ,they drive me nuts.
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Old 02-08-2017, 02:27 AM #13
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Default Re: Fibro Opinions

Hi Forgetmenot

Regarding the tics, have you been given an official syndrome name for the tics? Or is it just a Fibro symptom?
Was it included in your diagnosis as being a Fibro symptom?

I'm just trying to figure out if its something related or separate from Fibro.

I've tried finding known disorders with symptoms like what I experience and I stumbled upon BFS. There are other and all are very scary.

Today I'm half dead in bed, extremely weak and starting to get very nervous about what all this could potentially be.
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