Fibromyalgia

NanaRita · May 2023

I was recently diagnosed with Fibromyalgia and I would love to know of any coping mechanisms that people may have found helpful?

I suffer a great deal with pain, heat, and swelling in my hands and the only thing that seems to help are arthritis compression gloves. If I wear them at night, my pain levels in the morning are way less.

I have to keep my legs and back warm otherwise they and my hips and spine burn with pain.

For the headaches/migraines, I use an ice bag filled with ice, wrapped in a clean t-towel and I place it on the back of my head and neck for as long as it takes for the pain to go.

Other than those tips, I have no idea how to deal with this condition at all.

If anyone has the same condition and could share any tips & tricks that may help me cope with this very painful condition, I would be extremely grateful

poppy123456 · May 2023

I was also diagnosed more just over 10 years ago but have had fibro many years before that. I also have other conditions too.

Fibro affects people in many different ways, what works for one, may not work for the other. For me one of my triggers is cold weather or anything that's cold and this includes swimming.

Morning is my best time and from mid afternoon is my absolute worst. If i can't do what i need to do before 12 then there's less chance of doing after 12 but after 4 there's no chance.

I agree that exercise definitely helps, at least it does with me but only gentle exercise. I also understand that difficulty in pushing past that "barrier"

Stress is a major trigger for me and makes my pain go through the roof. I struggled for many years with being unable to sleep and no sleep also means more pain. Since being put onto Amitriptyline my sleeping has improved massively. I do still get some nights when i sleep bad or can't get to sleep because my day has been rather stressful and my mind is on overdrive but there's no comparision to how it used to be. That medication works wonders for me. I also know that what suits one person, may not suit another and i've tried so many different medications over the years.

You just have to try various things to see what works best for you. One thing i have found out a long time ago is that there's no miracle cure and unfortunately, all we can do is live as best we can.

L_Volunteer · May 2023

Hey @NanaRita. A fellow fibromyalgia sufferer here! Is there a particular part of fibromyalgia you are struggling to manage at the moment? Fibromyalgia affects us all similarly but also in different ways

chiarieds · May 2023

Hi @NanaRita - you might find some of the ideas here helpful: https://forum.scope.org.uk/discussion/102784/resources-and-tips-for-those-living-with-chronic-pain

NanaRita · May 2023

@L_Volunteer, thank you for replying so quickly. Hi fellow sufferer. It's quite debilitating isn't it! The really big issue I have is with the insomnia, and firey back pain. I have had sciatic nerve damage for the last 43 years, that I have learned to basically manage, but this aggravating burning in my lower lumbar spine that burns from the lumbar to the thoracic part of my back is really making it hard to know what to do with myself. The sciatic pain with the burning firey pain on top of it is so debilitating. Do I rest it up till it eases or do I push thru the pain and will that be a better idea long term? I just have no idea how to help myself. As for the headaches and jaw pain, along with the painfully swollen and tight painful hands and sometimes feet too, I have learned how to deal with to a degree. Goodness, just reading that back makes me sound like such a whiner, sorry.

If you have devised any coping schemes that you could share with me I would be so grateful as right now I don't actually know how to help myself tbh. Sorry to be such a wet blanket but this is something I really need advice on from someone who actually lives with the condition.

My own self help tips are these:

• Wear compression gloves at night for a bit of pain relief in the morning or wear them almost all the time during a flare up as they really do help.

• Use cold used tea bags when they are slightly damp to sooth your eyes, wipe your eyes gently with them and let your eyes dry naturally, you will find it helps with the dryness and helps your eyes to feel less gritty. This technique works with hayfever eyes too.

• For the headaches and migraines I fill an ice bag with ice cubes, wrap the ice bag in a t-towel and put in on the bottom of my head where it meets the neck. It's the best cure I know of for the migraines I get. Then I will go and lay down in a cool dark room till the pain eases. Always, always carry sunglasses with you for days when it's bright out and you have to go out, because sunshine can easily bring on the headaches I've noticed. Some people I know who have migraines use hot water bottles filled with warm water instead to ease the pain, but for me, ice works best.

• I keep my legs up when I'm sitting, and cover them in a fleece blanket. I do this year round because the pain in my legs is worse if I allow my legs to get too cold, or if I sit with my feet on the floor for too long.

• I use an electric blanket on really cold days to keep me warm as that helps me feel more comfortable.

• For the pain in my legs, I use a rolled up pillow that i use to elevate my legs and this behind my knees when I am sleeping on my back, or just using it between my knees if I am sleeping on my side, both ways I find that the pillow eases the pain in my legs quite a bit, and sometimes I use a hot water bottle for my feet to rest on because it soothes the pain in them.

• I have gradually reduced my food intake to about one half of what I used to eat and only eat when I'm actually hungry. This helps with the stomach pains and bloating, plus I keep a note of triggering foods and avoid them whenever possible. The other thing that eases the pain in my stomach is a hot water bottle wrapped in a towel, apply it to the stomach and it really can be very good for the pain in my stomach from IBS. Buscopan is very good and relieves the pain too from bloating. I also eat dried prunes every day, at least 4-5 of them and they keep my bowels functioning at least semi normally. I also drink no more than 4 cups of coffee a day, and I drink at least two liters of water a day. This helps me not get too dehydrated for my bowels and bladder to work correctly.

Those are the things I currently do for myself but I am open to any ideas you may have that will help me to help myself.

God bless you and thanks again for reaching out to speak to me. It's actually a relief to know that someone understands what it is to live with Fibromyalgia. Fibro totally sucks hugely doesn't it?

NanaRita · May 2023

@chiarieds, Thank you for replying so quickly. I have had a look at those links but found the information as to general. What I was looking for is the sort of information and techniques to ease the symptoms that a fellow Fibromyalgia sufferer could give me, which I have now found. Thank you for your kindness and help. God bless you and all those you know and love. Have a great day!

L_Volunteer · May 2023

Glad you have now found what you were looking for @NanaRita. A fellow fibromyalgia sufferer here, here if you would like to talk about it or if there is anything else we can do to support you

L_Volunteer · May 2023

It can be quite difficult to deal with, can't it @tony70? Sometimes, waiting is all you can do when it comes on suddenly

ElsieSE · May 2023

Hi all community fibro bros and sisters and scope members too.

One of my disabilities is also Fibromyalgia., I manage several. I agree with @poppy123456 all one can do is adapt to all relevant challenges this disease brings to our lives. For a long time consultants and even now some of our health practitioners think its an imaginary condition.

If you cope daily with this condition the weather and time of day does have a significant impact on the how our body reacts. When there is a rather severe flare up its an horrendous time for both the person and the family or any associates of the person with the condition. When associates i.e friends and family look on their usually helpless to help. I am particularly limited to walking. The more I try the more my body comes to a full halt.

I agree also, stress has a rather nasty impact on the symptoms. Has anyone noticed as the years pass by symptoms become multitude?

One of the most difficult to manage for me is the weight gain. Gosh I feel like i'm in a strangers body most of the time. No amount of healthy eating combats obesity. I always feel embarrassed and just want to hide to be fare. That the most negative psychological affect I try to cope with.

At times all the frustrations causes me to speak a little french under my breath l.O.l. Cursing has become apart of my daily life too. In a flippant manner, not in a vulgar or untoward way. Well we are human after all. The pain barrier only protects us up to a point. That side of my personality has been affected from time to time. Which includes patience tolerance with good reason I believe. This is a nasty condition to manage. The repetition creates exhaustion and the need to try to sleep. Unfortunately at the wrong times.

Socialising is very short lived and there our indeed limitations as to what one can participate in. Which depends on the day in question. So their is usually a strategy and second plan of action or none at all. The condition wins.

Fibromyalgia

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