Fibromyalgia sufferers

[QueenandKingMum]

Can you please describe what it is like for you? I have had 6 months of all over joints, muscular, tendon/ligament pain (feel like I have been run over every day). Saw a rheumatologist who declared I didn't have RA and discharged me back to GP. That was July, pain still excruciating and GP had done more blood taken but suggestion Fibro. I am so tired and sore I can't bear it.

[Mandy2003]

Did the rheumatologist do the proper fibro test? He/she should have pressed 18 points all over your body (a large number of them are in the upper back/shoulder area, plus elbows, knees - a diagram is available on Google). If about threequarters of them are very painful when pressed then you will get a positive dx of fibro.

[QueenandKingMum]

No he didn't. But to be honest I'm in far more pain than I was. I think it was too early? I suffered a miscarriage in April and its all spiralled. It's awful.

[QueenandKingMum]

I've googled it and all areas but one hurts

[HecateLarpo]

It is just being in constant pain to the point where it's just normal to be in pain and you can't remember what it feels like to not be in pain.

It's yelling at the kids ELBOWS ELBOWS cos they look like they're about to make contact and if they do, you will feel like you're on fire for about 15 minutes.

It's forgetting what you were talking about when you're halfway through a sentence.

It's forgetting a word! Standing there like a pillock because you just can't remember the word "yoghurt" or something. It's gone. It's not there.

It's feeling like there's a great big ball of cotton wool where your brain used to be.

It's not being able to sleep and not feeling like you've slept when you do!

It's laying there in a morning, totally unable to move because you seem to have turned to stone overnight and unstiffening is a process! (I can't wipe my bum in a morning. I just don't have the range of movement required.)

It's tingling. I lose sensation in my hands, arms, legs. If I try to sew on a button my fingers cramp, I have to drop my arm to my side and wait. I can't peel potatoes, I can't carry a heavy pan. Hell, on a bad day, I can't carry the bloody kettle from the tap to the socket!

It's speaking in tongues as you trip over your words and gobbledegook comes out.

bowel problems, dizzyness, anxiety... it's just horrible, frankly. And the worst thing is that it just becomes who you are. You get used to it. I can't remember the last time I wasn't in pain.

[QueenandKingMum]

Did it get there overnight or progressively worse? It started in my joints and moved to muscular/tendon/ligament. Now it's joints that click and fall out easily, cramping all over, constant headaches, sleeping crap, never rested. Can't do buttons or fiddly things. Muscles spasms.

Pain. All over and constant. I no longer have manageable days they are all horrendous and painful and I'm doubting my ability to work. It's horrible.

Yes to the fog and dizziness.

[HecateLarpo]

It didn't get worse over time as such, as in I am not getting worse now and it isn't a progressive illness, iyswim. It is worse than when it started over 15 years ago - after I got glandular fever. I have not been the same since. I just couldn't shake the tiredness and achyness and it went to crap from there. for a few years I just felt worse and worse and worse. Now I have flare ups where it's really really bad and times when it's more manageable.

[QueenandKingMum]

I'm sorry to hear that. What you are describing is similar to what I am experiencing. I am in pain constantly but the degrees fluctuate.

Thanks for your help. How do you cope with working? I am a childminder and it's agony.

[HecateLarpo]

I am self employed and work from home (I have a tourism website) so I work round my bad days, and the children. I am very lucky in that respect. I couldn't cope with a 9-5. I physically couldn't do it.

[mercibucket]

Sorry, I know this is annoying but please also make sure you get copies of your blood tests and double check the results yourself. I know plenty of missed diagnoses of
Hypothyroidism (tsh should be well under 2, t4 at least mid range)
B12 deficiency (over 500 at least)
Vitamin d deficiency (ideally over 90 but definitely over 50)

I had all 3 of the above and had the same symptoms you describe. Luckily my hypo showed up but Gp didn't notice the other two. There is also a theory in the hypo world that some people have hypo with normal bloods but get better on levothyroxine. This is a non-mainstream theory , but just fyi

[HecateLarpo]

Yes, I have an underactive thyroid and also have to have B12 injections every 3 months.

you're right about the blood tests. The test for thyroid problems is notoriously unreliable with symptoms appearing well before the blood test shows a problem, but so many GPs worship at the altar of the Holy Blood Test that they refuse to accept that you can actually diagnose a condition based on symptoms. If it looks like a dog and barks like a dog...

There is some debate over whether or not hypothyroidism and FM are linked. With some people suggesting that the symptoms currently lumped together as FM are in fact symptoms of thyroid problems. I've been reading up on it, it's very interesting.

[QueenandKingMum]

I have an appointment on Friday as GP ordered bloods, but I'm going to try to get in today I'm in agony. I could cry. It all just seems impossible, how can I work.

Ugh, moan moan!

[QueenandKingMum]

I already have those on my list to ask! ;). I've been on google way too much.

[HecateLarpo]

It is hard, but tbh, all you can do is find a way to cope. There's no cure. There are things you can take to help with some of the symptoms, but I found that accepting it, listening to my body, resting when I need to, etc, helps me to cope.

simply knowing what it was was a big relief too.

[QueenandKingMum]

I think that's it I need someone to tell me what it is and I'm not crazy. What can I take for pain that doesn't add to the tiredness? I am in fluoxetine already to try with no success. That and ibuprofen and low dose cocodamol. I have an appt at 11 what can I ask for?

[Saltire]

It is just being in constant pain to the point where it's just normal to be in pain and you can't remember what it feels like to not be in pain.

It's yelling at the kids ELBOWS ELBOWS cos they look like they're about to make contact and if they do, you will feel like you're on fire for about 15 minutes.

It's forgetting what you were talking about when you're halfway through a sentence.

It's forgetting a word! Standing there like a pillock because you just can't remember the word "yoghurt" or something. It's gone. It's not there.

It's feeling like there's a great big ball of cotton wool where your brain used to be.

It's not being able to sleep and not feeling like you've slept when you do!

It's laying there in a morning, totally unable to move because you seem to have turned to stone overnight and unstiffening is a process! (I can't wipe my bum in a morning. I just don't have the range of movement required.)

It's tingling. I lose sensation in my hands, arms, legs. If I try to sew on a button my fingers cramp, I have to drop my arm to my side and wait. I can't peel potatoes, I can't carry a heavy pan. Hell, on a bad day, I can't carry the bloody kettle from the tap to the socket!

It's speaking in tongues as you trip over your words and gobbledegook comes out.

bowel problems, dizzyness, anxiety... it's just horrible, frankly. And the worst thing is that it just becomes who you are. You get used to it. I can't remember the last time I wasn't in pain

All of that, then all of that again. I got diagnosed in 2004/5 after years of being in pain and being fobbed off.

[HecateLarpo]

I have codine on prescription. Although you can't take that all the time! I have amitriptyline that I am supposed to take at night but I don't cos it doesn't work, and the endocrinologist suggested it may be the reason I am losing my hair!

I also have PCOS, which doesn't help!

Exercise is supposed to be good. They always suggest exercise. But how do you exercise when you're so tired and in so much pain?!

[QueenandKingMum]

Sorry, exercise?? Ha! Not in a million years. Sure if I don't want to do anything but sleep the next three days. :)

[Saltire]

Hecate - I got prescribed gabapentin a couple fo weeks ago. Does F all for the pain but has eased (but not taken away) the tingling and feeling of wet patches on my limbs

OP I am a CM too, and last year made a decision to only do before and after school minding. It ha sbeen a great help. I work from 7.45am -9.00am and from 3.30pm till 5.00pm. Very occasionally do i have mindees in the holidays

[Saltire]

I also walk to school, some days it is hellish but I persevere. Today for example I ahve a bad flare up so we left 10 mintue earlier and took it slowly. I rst during the day

[HecateLarpo]

I know! I laughed in their faces when they said how good exercise was.

I am cleaning the house atm. I did the bath and had a rest. Did the loo and had a rest. Did the sink and had a rest. I have now done upstairs and I seriously doubt anything else is getting done today! I haven't hoovered for, must be 6 years. My husband does it. He also does the dishes because I break them.

When they start on with the exercise, they're lucky I'm in too much pain to leap up and punch them

It's crappy when they fob you off, isn't it, S? Comes back to the holy blood test. If it doesn't show up - it doesn't exist. What happened to knowing about symptoms and being able to actually diagnose things? grr.

[HecateLarpo]

xpost. I'll ask about that, thanks.

[bamboobutton]

It's exactly as hecate describes.

Don't give up trying to get a diagnosis, it took years for me to get my diagnosis. I'm pretty sure I've had fibro since my teens and have spent over 15 years going to the .gp for thyroid tests, iron level tests etc trying to find out why i am so tired. It got worse after i had baby 1, it was like the baby brain and utter exhaustion of the newborn phase never went away.

It was thanks to an old school friend who suggested i had fibro, i had never heard of it and when i googled it i knew straight away that this is what is wrong with me and took the print out to my gp, this was back in Feb and i got my diagnosis about a month ago.

It felt so good to know that i was properly ill and wasn't a faking malingerer.

[QueenandKingMum]

I tried gabapatin but made me dizzy/drunk does it pass? It's a neurotransmitter blocker I think?