Trying to understand and clarify what... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Trying to understand and clarify what is attributable to FMS.?

Sniffer8
Sniffer8

Tiredness is a massive thing for me. I'm sure that on the whole I sleep okay but I never feel rested or refreshed. Is it like this for others? I struggle to adequately explain even to myself what I'm experiencing but in essence I feel fuzzy all over, especially my head, a mild headache that does not require analgesics but I have most mornings. IBS I believe is part of FMS? I wake feeling a need to eliminate bowels and bladder and also what I can only describe as slightly nauseous (but never sick). I can have several trips to the loo to open bowels but never feel any relief from continuing urge. I know my spinal condition does not help re evacuation but cannot attribute what I have described to this? I can feel suddenly very anxious. I never shake off my fatigue with loss of energy. I fight it but could spend many hours in bed. It's like a fog envelopes me, I'm not really part of things, more a bystander. Does anyone else feel anything like this?

13 Replies
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Hi sniffer8 r u new here don't recal seeing your name before, if you are new welcome, ...yes you are describing typical fibro symptoms, me to a T infact, I can't stand the anxious feelings when they come, they are horrible, IB aswell s IBS is a symptom, r u on any meds...gentle hugs...Dee x

Sniffer8
Sniffer8 in reply to Cookie72

Hi, yes I'm new. Thanks for your response. I've said on a previous post that I can attribute some of my concerns to my spinal condition, some to FMS and some perhaps a combination of the two. I guess like everyone else here I'm looking for answers as we all need to make sense of things. Although my spinal condition was readily evidenced by MRI, it's quite rare and there is nobody I can discuss it with - certainly no forums like this. FMS diagnosed in some ways as all tests negative. I have great concerns for my future and envisage not being able to keep working at some point.

Agreed. Many experience some symptoms, some experience all. What your particular mix is, is unpredictable.

Your other post tells me your mix is unique to you. That actually makes you special. With a recent diagnosis it may take some time to find the right mix of meds for you. I have most of your symptoms apart from nausea. I've had IBS many years but it took a long time to twig that, and I think I've had Fibro at least a year but only got a tag for it last month. Now I have diagnosis and have joined this lovely mad group, I find FB explains a massive amount of what went on.

You sound really tough, so good on yer. I think it's ok to feel weak at times and just flop out. I do and come back refreshed though not the twit I was 20 years ago. It's hard keeping up a show at times especially when it seems others don't understand, a euphemism for don't have a clue. Like some, I take a trailer to the chemist for repeat scripts. I've other things going on, some linked, some not , but they all pretty well aggravate each other. Anyone will feel anxious when down and if you are already, it just builds up.

IBS does that up in the night with no result to me. It's a nuisance and makes insomnia worse!

Gentle hugs, Zeb has fluffies for you to draw on. :) :) :)

Sniffer8
Sniffer8 in reply to fenbadger

Hi, thanks so much for your response. I'm lucky so far that I don't take too many drugs. Take your point about maintaining a facade. I do this with my family to minimise their worries. Facade most employed at work.

fenbadger
fenbadger in reply to Sniffer8

Hehehehe here at least you can relax and drop it. I think that's one of the therapeutic aspects of this site. We seem to go seriously off topic. One chat degenerated into a virtual ice cream fight recently. I know moderators elsewhere would have frowned upon that. BUT and it's an important one, we can relax and be silly without strain and that's really helpful. The fuzziness might be part of your fibrofog. 'nite :) :)

Hi Sniffer8

If I haven't already welcomed you to the site, THEN WELCOME. I am so sorry to hear that you have this wretched illness and I sincerely hope that you can find some medications that give you some resolution to the problems.

When I read you post it was like looking in a mirror! I can relate 100% to every last thing that you were saying. I must admit that I have only been diagnosed for a few months but I have found the site incredible and invaluable and I sincerely hope that you do also.

All my hopes and dreams for you

Ken x

Hidden
Hidden

Hello welcome and yes I too have most of your symptoms. With your IBS have you tried keeping a log of what you eat and how it affect you. Different food can cause a flair up, ///i took quite awile before I foun out that tomatoes was a big nono, becousse I was eating them every day in pies stews ect 'I didn`t take them into acount .differnt food affects different people. its a matter of trial and error I think thats anough for cus my brain has gone on a go slow hugs sue

Hi, Sniffer. Love your post...you say you struggle to explain what you're experiencing, but you've managed to put into words what many of us are going thro'. Clever you!

Hi Sniffer, Snap!! Just like you I awake in the morning with a "great urgency" to empty my bladder, sometimes it is a race to reach the bathroom before I wet myself! I also suffer with irritable bladder during the daytime.

Then within 30 minutes of getting up I feel a great urge to open my bowels.... this usually happens with a massive explosion and diarrhoea ( hope this description does not offend anyone!).

I was diagnosed with IBS nearly 30 years before my fibromyalgia diagnosis. What I cannot understand is why this only happens first thing in the morning ....maybe I am completely empty.

The other strange thing is that I never seem to experience this diarrhoea when I am away on holiday... in fact quite the opposite.... I suffer with constipation !!!

I tried diets cutting out various foods, but nothing seems to make a difference.

I totally understand the "fuzzy head" ..... I say my head has "been stuffed with cotton wool" .... sometimes my whole body even feels like it's made from cotton wool!!

Like you I keep up a "pretence" that I am ok.... why would my family and work colleague s believe that I don't feel great, when I look exactly the same as I have always done?

This site is very supportive... it helps to know that you are not the only one experiencing these symptoms. Xxx :)

Hello All & Welcome Sniffer8

I have noticed you have been discussing tracking you IBS symptoms and I wondered if this site may ?

theibsnetwork.org/what-we-o...

The IBS Network offer good help and advice too, it may be worth looking at this site if you haven't done so already

Best Wishes

Emma :)

FibroAction Administrator

fenbadger
fenbadger in reply to Mdaisy

Hi again Sniffer, the one I hate is phoning in sick from the loo, then nothing happening for the rest of the day. I could have gone in. . . . D'oh.

Hidden
Hidden

oh I have that too, the repeated, explosive trips to the loo first thing in the morning...from when I first wake for about 2 hours - and then although I *feel* like I have to stay close to the loo, I actually have to get my kids to school, so have to "hold it in" til I get back from th school run. I think the walk in the mornings helps, though, because I'm usually ok while I'm out, as long as I do get to use the loo again when I get back. And then, depending on what I've eaten, I'm usually ok for the rest of the day. Occasionally I have "flare ups" where any time I eat or drinkanything it goes through me in about 20 - 30 minutes. I also discovered I've become allergic to eggs and intolerant to dairy, so any time I have even a *tiny* amount it makes me really ill. Pretty much everything else you mentioned too affects me. May I ask what your spinal condition is?

Hi UK, sorry for this late response. Just reviewing my posts and realised I didn't reply to you, very rude of me! My spinal condition is post traumatic syringomyelia. I have a fluid filled cavity in my spinal cord from T3-11.

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