Worst flare up

[Gypsy17]

I’ve been in a flare up for just over two weeks now (this is my longest one since diagnosis) and I thought I was getting better, however today I did a walk and i’m now in the worst pain i’ve ever been in. My legs feel like they are on fire, my back is in agony and I have pains down both arms. Any advice for during a flare up as I am really struggling? I’m only 23 and its starting to effect my mental health and make me really fed up! If anybody has any coping mechanisms or ideas for both the pain and the mental side I would appreciate it!

[CM1EDSUK]

Hi Gypsy17 - I suffer from chronic pain (not I must say from fibro, rather from a disorder with some similarities). I've found (& from what others have said) that often it's a combination of things that help the best to dampen things down a bit.

With fibro however, it's important to try using a pacing technique possibly first & foremost, i.e. find your limitations, & don't exceed these even on a comparatively 'good' day. That said, I use gentle exercise, distraction (reading, music, watching a film....whatever you enjoy; a hobby perhaps), mindfulness, & a simple breathing exercise which can reduce both stress & pain. Please see: nbt.nhs.uk/sites/default/fi...

I also have been using CBD for nearly 4 years, There's not as yet much research about this, but it seems it's most helpful for pain & anxiety, so might help you both physically & mentally.

Hope this may help a little, & kindly say how you get on.

[Flowerc in reply to CM1EDSUK]

Hi would you mind me asking what CBD do you use and what strength please

[Matrix]

Hey Gypsy 17 , I have had fibromyalgia since I was a little girl and what the lady said below is very true I am now a nana to 6 so you see I have had it for a very long time

If you have not been on a pain clinic course yet ask your dr to get you on one , it was so good they teach you how to pace yourself and how not to feel guilty etc .

As soon as I can feel a flare coming I start taking pain relief every four hours until I’m out of it . It’s not easy but please know the flare up will come under control eventually . The important thing is not to push yourself as soon as it’s getting too much stop and rest . Best wishes hope it stops soon xx

[Blearyeyed]

So sorry Gypsy , we all know how horrible the Fatigue is and how much it increases the Pain.It is a positive thing that you have reached out for help , and you are clearly not giving up on yourself and trying hard so you should give yourself a big pat on the back for that.You are stronger and braver than you think.

Fatigue is hard to get to grips with.

It is a great step that you have tried to keep motivated and keep active as this is one of the best ways to get Fatigue and the Pain it causes back in control, even though it feels like moving through wet concrete while you try at first.

Maybe your walk was just a bit too long .

Fatigue hates Stress , and Stress isn't just a negative thing. Stress is any physical or mental activity , good and fun or bad and sad , that is too much for your body or brain to cope with in your current health.

So start small.

Do a little activity , like walking or gentle stretches , but just for five minutes an hour at first.

If you have a busy or physical job you do things the other way around , make sure you sit down and do some relaxation for 10 mins each hour.

You build up more activity little by little each day while pacing yourself with rest and relaxing breathing exercises until it feels like the Pain is reducing and the Fatigue is passed.

As Fatigue improves you can do longer activities as long as you don't try to push past your comfort zone. No pain , no gain is a myth , any good physio will tell you that.

Drink plenty of water , you may not feel thirsty but a body in Pain is working really hard to heal itself and needs the water to do it , you can be dehydrated without knowing it and that adds more Fatigue.

Take a vitamin and mineral supplement with one of your meals , and eat smaller portions 5x a day instead of three big meals . It takes less of your energy to digest and you feel less sluggish.

You may also benefit from extra Vit C for a while too.

Do any self care things that help you relax and feel better , like a bath or foot soak , some people find cool cloths on hot spots helpful. A quick chat with friends , sitting with a good book , film or your favourite music, playing with a pet. All of these things help your mental health and that helps the Fatigue.

Also be willing to stop and guilt free if you can't do something or need to cancel plans , it will help you heal quicker and your friends and family will understand if you tell them honestly how you are feeling.

It takes time but with patience and gentle routine this will pass. When it has you will have also learnt some positive ways to help you pace your day at an activity level you can cope with , which is a real positive , as it will reduce how often you have a flare.

Take care , and if things don't improve , or you feel down post again , you will get plenty of support here , Bee x

[lizashfield]

It's horrible. It is difficult to cope with but I would say be kind to yourself. This is not your fault and there are times when you just have to rest.

When I was diagnosed I attended counselling. One of the things my counsellor asked me is what would I say if one of my friends was going through what I was. Naturally, the answer was that I would be sympathetic, etc. She then told me to apply that to myself.

One thing to avoid is going flat out at something once you feel better. As others have said pacing yourself is important.

Take care and, remember, be kind to yourself.

[Midori]

Can I hazard a guess that you don't walk much?

I find that since Covid I have lost so much fitness, and trying to get it back is very difficult, knowing how far to go before a flare strikes back!

I get most of my food delivered, but some things I like to choose for myself (Lettuce, tomatoes and other fresh fruits and veg). Tesco, I can see from my window, down in the valley not far at all, but when I go there, and try to get back up the hill on my Rollator, it's enough exercise for the whole day!

I find myself with most energy in the morning, but I have to harvest it in small amounts, or by the end of the day I'm wrecked!

Unfortunately to keep any level of fitness it is important to do some moving exercise each day, and slowly increase it. When I can find them I use wrist and ankle weights to give myself a little more to fight at.

Cheers, Midori