So sick of having no energy. I'm new to the forum, just looking for support bc i feel so alone and feel like no one gets it

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,956
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
It was freezing!
I can imagine - it's not just the jab in my case - cold water is colder in the winter, at least ours. I spare myself every second I can...
Forgot to add that aside from my +1=5 pairs of socks since the 1st jab, this "winter" I've been wearing longjohns all the time now, outside and inside, one for the daytime, one for the night, and an additional top at night, hot water bottles need to be warm all night long - but not too hot either. :rolleyes: . Hope that wears off soon, as I'm not sure what I can add next... I hate electric blankets cos that type of heat makes me go woozy and my skin hates synthetics. Used it for the last jabs, this time I prefer the longjohns and hot water bottles and moving around more despite the nausea.
I've just ordered some warmer slippers one size bigger so all the socks fit in and there may still be some air to get warmed up.... 🧦
Not helping that we're saving heating more cos of the war energy inflation... 💶 ⚔️ So good to keep in practice with the cold showers :rolleyes: 🤣
 

fimi

Senior member
Joined
Apr 12, 2022
Messages
233
Reason
DX FIBRO
Country
UK
It is getting pretty cold now. that's for sure. I'm not really into electric heat either. I do have stuff like that which I use sparingly, but I much prefer the old fashioned hot water bottle.(y) In fact, I've just bought myself another small one that wraps around with velcro on the end. It's great as I can walk around the house while it's warming my back and easing the pain. The downside being I look like a tortoise! :rolleyes:
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,956
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
just bought myself another small one that wraps around with velcro on the end
Ah, I'll be digging our 3rd, small, one out too, a 'dressed up' one.

Got none with velcro, but reminds me of our 5-6 spelt/grain bags, 3 with long cords, but pretty big and heavy. One reason for not using them is they keep the heat less well than my hot water bottles, altho the 2 big ones are naked pure rubber. Strange, cos I keep reading grain is sposed to keep the heat better. Another reason is that I don't really like using the microwave and at night I'd wake my wife up using it, not with the water boiler. I've learned to fill it in the dark, even with eyes closed. As boiling water would be too hot without covers, I either turn it off at a certain noise level (which would scald less when filling if I miss) or more often now I leave a rest of cold water in there and fill up with boiling water, so I can do my 'other sleep break things' and get back to bed faster.

(We now save the water rest from all the hot water bottles for the flowers, as I researched that that is no problem, and also recently for the wild birds on the balcony and in the garden, altho I'm not sure if that's OK for them, and I can't find anything about that, except that it's not dramatic to drink that water once, it just gets musty if you re-use it, which we'd need an extra water boiler for, which isn't worth it, unless we find one used.)

Back to the truth behind @Auriel's thinking I tolerate the cold: I do make sure I'm always warm, so don't usually get cold pain, so in that sense I do "tolerate" the cold, as I've learnt to adapt to it, and so it's lost all of its sting and threat. Apart from warmer clothing, I need to keep the time I'm outside down, and keep moving, which again keeps the time I'm outside down too, cos of exhaustibility - an hour max.
For outside I always have an emergency kit with me: rain legs and iron filing pads which heat up when opened for hands and feet.
Like all triggers it's a case of calmly! avoiding, preventing, alleviating, and especially balancing. Since I can't think of anything that isn't a trigger for something in my body, this balancing is most important - e.g. each possible posture, all life necessities, everything that's "fun" are all triggers, so I need to balance them all by calmly continually quickly switching what I do and how.

When I said above I don't know what I could add on next, that's unnecessarily dramatizing:
Firstly, I can put mittens and a winter jacket on inside, also carry the hot water bottles around more, put iron filing pads on.
And secondly, I will always think of something, and thirdly if I don't, "you" will. There's always help to be found.

Another problem with the cold is chapped lips and hands (which can then start bleeding), whether I cream them often or just occasionally. My wife claims she has a brilliant cream for "that". Which I'll be trying (I think: again), if not just to prove her wrong... She usually remembers I'm different, but sometimes she has to get it proven. 😼
 

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,318
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
My favorite thing for chapped lips and dry skin, which is ever present in the desert in winter is to put shea butter on my skin. A little goes a long way and it is 100% natural and pure and very moisturizing. Just rub it in well so you don't have a greasy feeling residue.

And for lips, my #1 is O'Keef's lip balm. I also use O'Keefe's "Healthy Feet" on my feet all year around to keep calluses from getting too thick and then cracking, which is more painful than you would think it could possibly be.

Don't know if O'Keefe's is available everywhere, as it is an American company, but you should be able to get 100% pure African shea butter, and it will work for everything. Just make sure it doesn't have other, possibly less healthy, ingredients in it. If you didn't want to use it alone, you can look up how to make skin cream with shea butter and learn the proportions of other ingredients to add to it if you want to. I just use it straight out of the container.
 

cookiebaker

Senior member
Joined
Jul 26, 2022
Messages
491
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
I hate electric blankets cos that type of heat makes me go woozy and my skin hates synthetics.
have you ever tried heated mattress pads? they work much better than electric blankets (i dont like the blankets either).. and being a mattress pad, it would get covered by sheets, so no synthetics next to the skin.

on our bed we have (from mattress up) a 2 inch memory foam pad, the heated mattress pad, a nice thick, fluffy mattress pad then sheets.
Funny thing is tho, i dont use the heated pad much anymore.. i tend to be overly warm at night now.
Anyway, just a thought...

for chapped skin i like lanolin - also 100% natural.. altho shea butter is also excellent.
 

JamieMarc

Active member
Joined
Nov 17, 2021
Messages
76
Reason
DX FIBRO
Diagnosis
10/2021
Country
US
State
FL
My favorite thing for chapped lips and dry skin, which is ever present in the desert in winter is to put shea butter
I use shea butter as a skin moisturizer every day. It's the best for me: natural, effective, non-greasy, and I love the scent. For really rough skin, like the soles of my feet, I use a coconut butter balm.
 

neslihand

New member
Joined
Nov 24, 2022
Messages
1
Hi,
6 months ago I gave birth. 3 months ago I started feeling awful exhausted fatigue pain everywhere in my back neck etc. I thought I will never be fine again and was very sad all time. This all happened while I was on holiday in Turkey. I decided to go back to the UK. I went to the GP and they did a lot of different blood tests. The doctor called me and told me like; I will send some high dose of Iron tablets to the pharmacy start taking them and let's see what will happen. I was thinking like iron?? can it really be iron? So I went to the pharmacy and got the tablets. I started taking them and it was like a magical change in my life. I was not able to go outside before and now I started feeling very strong and went outside had no pain anymore. I got also some sleeping pills and that helped me too. Sleeping is very important.. and with a baby its not easy. Next to this I started taking a lot of other vitamins like turmeric, Vitamin D3, K2, high dose omega 3 with high value of DHA and EPA.
I really know how awful it all is and still scared sometimes that I will have pain again. The iron really helped me and it is still helping me. I am not sure if it will work but start first with Iron and then the rest.. a HIGH dose is very important..
I wish everyone health ❤️
 

Auriel

Very helpful member
Forum Supporter
Joined
Jun 8, 2021
Messages
851
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Thankyou @neslihand wishing you the same also 😙 💕💕
 

JamieMarc

Active member
Joined
Nov 17, 2021
Messages
76
Reason
DX FIBRO
Diagnosis
10/2021
Country
US
State
FL
a HIGH dose is very important..
A word of caution is in order here.
Iron in high doses can be toxic, not to mention interactions with other meds. Please check with your doctor before taking high dosage iron or, if not possible, start with the lowest dose available, and always check for drug/food/health condition interactions. Ideally, get your daily recommended allowance of iron from your food diet.
 

cookiebaker

Senior member
Joined
Jul 26, 2022
Messages
491
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
a HIGH dose is very important..
not just a word of caution from me - but more a warning - taking high doses of iron when they are not medically needed can be toxic to your system.

You need to have proper testing done to determine if it is needed or not.
If you are very low on iron, then yes, under a doctor's supervision it is perfectly acceptable, but dont just add high dose iron without being tested first, please.
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,956
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Thanks, @sunkacola, @cookiebaker and @JamieMarc for the suggestions, I think I'll try the shea butter. At the moment I'm doing quite well with a cream someone recommended for Raynauld's called AkilWinter/AkilHiver, but I have to use it about 10 times a day - is that normal d'you think?
 

cookiebaker

Senior member
Joined
Jul 26, 2022
Messages
491
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
but I have to use it about 10 times a day - is that normal d'you think?
it all kind of depends on the lotion, i think.
some do need to be reapplied frequently, others not as much.
That is kind of why i like the lanolin based stuff - yes, it does tend to be a bit on the greasy feeling side initially, but you dont have to reapply nearly as often. for my feet especially, i like to apply liberally, then put on some cotton socks so the sheets dont get all greasy, lol. the socks have the added benefit of keeping the cream where it is needed. same could be done for the hands if you can find some cheap, lightweight, cotton gloves to put on.
 

JamieMarc

Active member
Joined
Nov 17, 2021
Messages
76
Reason
DX FIBRO
Diagnosis
10/2021
Country
US
State
FL
@JayCS well who can say what's normal since we're all different and live in different environments. As for your hands, I think much would depend also on how often you have them under water during the day. That being said, 10 times a day does seem excessive. I hope the shea butter works for you. I think it's really awesome!
 
Top