Looking for answers

Jan wales

New member
Joined
Dec 14, 2020
Messages
5
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Undiagnosed
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Country
UK
Hi
Looking for answers I did the usual googling and found a piece on fibromyalgia. I ticked off quite a few (15) of the symptoms. I am actually off work today and took a covid test this morning. I do not have the main 3 symptoms but I work in a school and didnt want to possibly infect anyone.
Since Friday I have had aching heavy legs that just have no go in them. And symptoms of IBS with frequent trips to the loo. Occasional slight nausea.
What has led to to you is this. I will list my symptoms that I have been dealing with for about 18 months on and off.
Tingling big toes on both feet when I lie down which can be an odd numb sort of feeling when i wake. Walks off as soon as i get up. My left foot heel all the symptoms of plantar fasciitis for the last 6 weeks.
Tired heavy legs especially at night. I'm using pillows under my legs or butt but dosent help.
I never sleep all night. I often wake up only an hour after falling asleep and will be awake for 2 or 3 hours. I rarely have trouble getting to sleep. Just staying asleep
Headaches. That seem to come in clusters. Every day for about 4 or 5 days then nothing for a few weeks.
IBS symptoms that alternate between constipation and diarhea. I can go sometimes 6 times a day. I had that friday and saturday. Added to my covid thoughts as diarrhea seems to be an early one. Some days continual flatulence which is a nightmare trying to hide lol. I have been taking probiotics for 4 months which does help. If I dont eat bread. At least I'm not suddenly running to the loo and just getting there in time like I was
Tingling around my lips and sometimes tip of my tongue.
May 2018 I saw a doctor. My tingling in arms legs and soles of my feet was so bad 111 service said to go to a and e as I could be having a stroke. They did tests but all was fine. Couldn't find out why. Not very helpful!
I also have very little sense of smell. This has been over a number of years. Some days I can get a whiff of something but I have to stick my nose on the bleach bottle just to get a slight aroma!
My Gran had pernicious anaemia and I have been low on iron before but no they said b12 was fine
My Dad died of ALS motor neurone in 1977 at age of 50. Nobody else in family has had it.
Today my legs feel heavy as if they need new batteries and I dont have much appetite at all. I have 2 pain points at each side of my bum cheeks near my hips. Feels like I've done way to much in the gym. Hurts to sit and to touch.
I do a lot of walking about 6 miles a day so I keep active my diet is not too bad apart from the odd naughty things. I dont like coffee dont drink alchohol (never found a drink I like!) And dont smoke.
Hope this isnt too long and thanks for reading 😊
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,203
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hi Jan, You have a bunch of symptoms, but no one has told you what is causing them, or diagnosed fibromyalgia. Fibromyalgia is something that is diagnosed by eliminating everything else that could be going on. It would serve you well to get tested for all of the other things that could be going on for you, such as MS, ALS, and so on. Otherwise you won't know what it is that you have and how to manage it. I know that's a lot of work and doctor visits, but it's really a good idea.

If not eating bread makes some things better, then I suggest you try going completely gluten-free. Do some research on this so you understand what it entails. It would mean not ever eating anything that contains wheat, rye, or barley...or triticale, which is wheat and rye together. You have to read all ingredient labels because things you wouldn't think have gluten, do. I am completely gluten free, and while it is a hassle just at first I got used to it in no time and there are so many gluten free alternatives to things now that it's no problem at all.

Best of luck to you.
 

Jan wales

New member
Joined
Dec 14, 2020
Messages
5
Reason
Undiagnosed
Diagnosis
00/0000
Country
UK
Hi thanks yes I have got gluten free certain things I've replaced but haven't gone the whole hog,will give it a try I think. Thank you. The covid situation in Wales at the moment is awful so I don't think I will be getting any referrals to experts any time soon unfortunately
 

Jan wales

New member
Joined
Dec 14, 2020
Messages
5
Reason
Undiagnosed
Diagnosis
00/0000
Country
UK
I meant to add also I notice a lot of posts mention cold weather affecting you. I work in a school kitchen as a kitchen manager and due to covid restrictions we have to have the doors and windows open all day. It is absolutely freezing. Last week most mornings were around 1 degree c. It's like working outside and we are not allowed coats. I've layered up but it's ridiculous. I put my lack of body temperature control down to the menopause but I'm 8 years past that now. Always cold in winter and can't deal with heat. Never used to be like that. Maybe working in the cold has brought on this on Friday last.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,203
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Wow, you must be suffering working in those conditions! For me, a dry cold with the right clothing is fine, even if it is very cold. But a damp climate with cold is very hard on me. I wouldn't doubt that this has brought on more pain for you.
I admire your fortitude going to work under those conditions and hope that things get better soon.
 

Jan wales

New member
Joined
Dec 14, 2020
Messages
5
Reason
Undiagnosed
Diagnosis
00/0000
Country
UK
Oh thank you! It has been cold yeah 😁 but if it keeps us safe then that's the way we have to live at the moment I suppose. Bring on the vaccine! Only 3 more days and we are closed for 2 weeks. Normally we are sweating in there when we are cooking so makes a change at least. Thank you 😊
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
404
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Hi Jan, whether fibro or not:
Has your "thermostat" been tested for thyroid problems? :)
I have to stand in the cold at work too, but manage quite well with layers all over, especially feet (4 pairs of socks).
Probiotics never helped me for IBS(D), neither any allergy diet, just an elimination diet.
I've pinpointed (30) wakers via a sleep diary, plus my TCM/acupressure and showering at night help, herbs/supps didn't, probably best was 5-HTP/L-Tryptophan/Melatonin and using lavender & relaxation techniques like autogenic training/self-hypnosis to at least keep dozing. I need 9h of sleep.
Tingling might be worth a neurologist-check to be sure.
For tired and heavy legs I use cold washing or showering, cryotherapy, best is TCM/acupressure.
 
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