Whatever I do and wherever I go out I... - Fibromyalgia Acti...

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Whatever I do and wherever I go out I suffer afterwards .

angib53 profile image
26 Replies

The fibro is severe just everywere I spend most of the time at home as I can only just get to appoitments , so I move around at home , I make sure to move around as much as I can , unless im flareing !. Within this padt year I have become worse and stillnunder a pain doc . I never get a break from pain , rushing , pulsing ect in my legs , im trying cold compress at the momemnt . Im dredding the winter , but ive gone through all the seasons now from being diagnosed last year , the humidity flares me , the cold also , sorry to vent but like us all just a little break would be gd !. One thing I do everyday sometimes twice is have hot baths , might even invest in a hot tub ! Any suggestions welcome ,, big hugs to everyone , I hope it makes sense as im very foggy today xx

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angib53
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26 Replies
Ginsing profile image
Ginsing

Hi Broadband,

I know just what you mean it is wearing infact it draws us down. What ever you do dont give up trying to get out and about I feel it is worth the pain and exhaustion.

I am the same the bitter cold of winter makes me hibernate as the pain increases and unfortunately the very warm weather seemed to be doing the same this year but even so it was lovely.

I can .no longer soak in a bath so I stand under the shower directing the water at my hurty bits.

I hope you rest well today tomorrow who knows we may all feel better (she said ever hopeful) xgins

she33 profile image
she33

I spend a lot of time just sitting in a hot bath trying to ease the pain and i too am dreading the winter here in scotland we are suppose to be getting a lot of snow so i will be housebound as i will not drive in the snow. I also dont get out much like u i just potter around the house not doing much just trying to pass time, its a horrible thing to deal with and everyone is the same and yes a day or even an hour without pain would be bliss but no going to happen. Try and keep ur chin up x

Cookie72 profile image
Cookie72

Hi broadband, your right the pain is with us 24 /7 never leaves us does it, it's enough to drive you mental, when I start to feel down and the pain is really bad, I think of the people that are suffering the same as me and all those people that have something far worse, ie a terminal illness then I tell my self, well at least I'm not going to die from it, ...but it is most defiantly a bummer of a condition and there's nowhere in the body that escapes it....sending. Really gentle hug ....Dee xx

Sarah-Jane profile image
Sarah-Jane

Hi all, be aware you could be missing vitamin D which will make pain worse. If you need it, don't forget to take it. I've definitely benefitted from it his summer. The warmth plus vit D helped. Forget it and symptoms slowly increase.

I can only lay in the bath with a towel underneath me or the bath feels like ice and hurts. Rarely bother trying now. Showers are good when I'm able to get into the bath and stand long enough.

If you get DLA do you have the mobility allowance to help pay for a taxi or your could do the mobility scheme and get a scooter to suit your needs and circumstances. Mine will do fields if I need it to! Get over looking 'elderly', you're disabled and kids use these, just doll them up to your personality. Mine has a car seat cover on it. I use a wheelchair in the shops too. You can usually hire a scooter in shopping centres. Wrap up properly and don't overdo it.

Yes we hurt. I certainly do. But after a long day at work, feeling exhausted and in pain, I have a cup of tea and 30 minutes rest then I take my cavalier out for her run. She sits on the footplate whilst I go on the road (smoother than pavements!) and go to the nearest cycle path (lovely and smooth, no bumps for my bones) then she's jumping up and down until I switch over to 8 mph and we're off! When I get home I'm refreshed as if I had gone for a run myself (without FM of course).

Currently my scooter is out of action and I miss that buzz! I hope you are well enough to try. All the best wishes, soft hugs

adapting profile image
adapting in reply toSarah-Jane

i second the vitamin D!

angib53 profile image
angib53

Ty guys x im sending big hugs too xxx

Ginsing profile image
Ginsing

I agree vitamin D is useful do get your doctor to test your levels he may prescribe it and you will get the right level.

xgins

haribo36 profile image
haribo36

Hi there,I have also had mostly bed/at home days lately so I can emphasise with you.I use wheat bags for my pain and I did have a fab electric heat pad which you plug in but it doesn't work now so I need to replace it.I find these are invaluable for my pain or you can use a hot water bottle instead.Ive been reading about peeps on here that have taken up new hobbies to help pass the time,keep the brain active and distract from the pain.Alot of peeps have mentioned creative things,I would like to try something myself actually.Maybe something like that might be helpful?Sending you lots of relaxing and pain distracting vibes x

angib53 profile image
angib53

Hi haribo , I have the heat pads for around my legs and one that goes around my shoulders and arms , I plug them in so its constant heat , I agree with finding a little hobby , I think if I let my mind go , its not good I become more negative than positive , especially when flareing it certainly messes with your mind ! I might look at jewellery making , to keep ming going in the right direction ! Not sure if you live in uk but I bought the heat pads from aldi there a godsend xx big hugs to you xxxx

Ginsing profile image
Ginsing in reply toangib53

Hi broadband I totally agree with you finding a hobby of some sort helps we can use it as you say when we can and they give a sense of satisfaction. Also those times when we are feeling stupid lethargic we have evidence that we are neither. Het pads sound marvelous I tend to use cold packs as I suffer from the heat not I have lymphodema as well and my legs are totally bandaged from foot to knee. I look even better than Nora Batty. I have managed to loose weight which is good still a lot to go though. Keep smiling and be positive it helps so much

xgins

haribo36 profile image
haribo36 in reply toangib53

I brought mine from lidl a few years back.Do they still do them on aldi?x

Mdaisy profile image
Mdaisy in reply toangib53

Hobbies are good Idea, in my personal opinion, I have found when flaring I use different hobbies, usually ones I never thought I could do but always admired in others. It is challenging but learning provides the distraction. I have done Card Making & decoupage, learning the guitar & recently making items on the sewing machine. You can get loads of ideas for websites like pinterest about card making, recycling clothes, recycling any items and clever ideas about things to make. I find it therapeutic and I would recommend taking up a new hobby !

angib53 profile image
angib53

You take care too xx will startvto look at hobbies xxx

angib53 profile image
angib53

sorry haribo it is lidl not aldi , they do still have them at lidl xxxx

haribo36 profile image
haribo36

Great news,I will have to take a trip there one day.Can you order online do you know?x

angib53 profile image
angib53

Im not sure , do you have a lidl near you ? Xx

haribo36 profile image
haribo36 in reply toangib53

There isn't one near me,it's about a 20min drive away.Will see if I can go there this week x

angib53 profile image
angib53 in reply toharibo36

Hope you can get one , I have one on shoulders and neck now , its lovely x let me know haribo xx

butterflygirl1 profile image
butterflygirl1

I know exactly what you mean I went to a surprise 70th Birthday party on Saturday night, (I don't normally go out) as it was only up the road both my partner and myself thought it would be okay, I had my crutch so off we went, not too bad when I got there only stayed a couple of hours and then walked back down the road was exhausted and in pain when I got home so took my pills and went to bed. Paid for it Sunday and today only just got out of bed! so this is why we don't go anywhere its not worth the pain and exhaustion afterwards. :( I wish I had a magic wand to make it all go away not only for me but for everyone who suffers we might look okay on the outside but on the inside our bodies are screaming its just not fair. Look after yourselves peeps sending big fluffy chocolate hugs xxxx

angib53 profile image
angib53 in reply tobutterflygirl1

Tc butterfly hugs angi x

haribo36 profile image
haribo36 in reply tobutterflygirl1

Aww,I do love the sound of fluffy chocolate hugs,yummy :)

Mdaisy profile image
Mdaisy

Hello All,

You may be interested in a prescribed pain relief cream called Capasacin Cream.

Capasacin cream is known to reduce Substance P , a substance which is excitable when you feel pain. Research has shown that people with Fibromyalgia have 3 times the amount of Substance P than healthy people do.

I found it very beneficial and thought I would mention it out of interest. Link below;

nhs.uk/medicine-guides/page...

I found using it I was able to work up my exercise tolerance as the pain was less, however as we are individuals it may not suit everybody.Please be aware that for people that are sensitive to medications, this may be something that should be avoided. Capasacin is made from Capiscum pepper and you must be careful when using avoiding eyes as it is similar to pepper spray.

No smell to it but hot so please use sparingly as per chemist instructions.

Hope this helps

Emma :)

haribo36 profile image
haribo36 in reply toMdaisy

Thanks for that mdaisy,I will look into it.Can you buy it at the chemists?x

Mdaisy profile image
Mdaisy in reply toharibo36

It's prescription only I'm afraid x

angib53 profile image
angib53

Hi emma I would have tried the cream but iam really sensitive to meds . I will just continue to wrap all my heat pads around me xxx hugs angie xxxx

RIBBONPINK profile image
RIBBONPINK

HI BROADBAND.I TRY TO TAKE MY MIND OFF PAIN BY KEEPING BUSY, CRAFTS,CROSSWORDS.RESEARCH ON LAPTOP.I CANT TAKE PAIN TABLETS BECAUSE OF STOMACH PROBLEMS .I HAVE MENTIONED MAGNET WRAPS,IT HELPS BUT YOU NEED TO DRINK MORE WATER.I HAVE USED FOR YEARS NOW.MAY BE THAT WILL HELPX PINK RIBBONS

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