Fibromyalgia

[Flipflop50]

I have just been diagnosed with fibromyalgia. I don’t know the first thing about it apart from it’s doesn’t have a cure.

I have looked online but I just don’t understand it.

If anyone out there can give me some hope please comment. Dramatic but this is how I feel

[SophieB100]

I work, I find it helps me.
I'm a TA in a High School, so in class and run my own small groups. Yes, it's tiring, but if I pace myself I find I'm ok. I feel worse in the mornings, but get better as the day goes on. If I've been at work all day, then I always go to bed quite early, even if I feel I don't need to.

I think a good diet helps too - I lost a lot of weight last year, and this has helped loads. Less pressure on joints, I suppose. And yoga helps too. Just gentle stretches.

I suffer more if I'm stressed, and also if I spend too much time alone. It's a fine balancing act - doing enough, but not too much!

[Flipflop50]

I don’t have a tracker or any kind of plan as this is all new. I don’t even know where to get them. X

[Flipflop50]

Wolfiefan It’s good that you are looking after your self. Well ish made me laugh!

[picklemewalnuts]

Flipflop, I'd say you need a job that's not physically demanding, and not particularly stressful. It's not always easy to work that out from an advert.

If you can, take a bit of time to work out what you can manage- it's an investment. I was told to avoid 'boom and bust', so do a bit less than you can manage. Over time your capacity increases and you are able to do more. If you jump straight in at full throttle though, you relapse and end up able to do less.

Have you got an activity tracker of some kind? Or a graduated exercise programme you could start? Set an easily manageable amount for each day, and do it. After two weeks managing that with no ill effects increase it by a small amount. Increase each time you make it to two weeks with no ill effects.

[Wolfiefan]

Bless you for asking. It’s not going to be an easy couple of weeks. I enjoyed reading and a glass of wine and continuing the crime binge on TV last night.
I’ve got some Stilton and broccoli soup in the soup maker for lunch and a curry in the slow cooker. Feeling a bit crap and depression is rearing its head but I know what I need to do to stay well ish
Hope you’re all having a well ish day too.

[Flipflop50]

Wolfiefan How are you today?

[Flipflop50]

So it’s possible to work, just with lots of care and planning.

I have just had to give up my job being a full time enhanced veteran support worker. It’s an all in kind of job. I don’t know what to look for now.

[picklemewalnuts]

I work part time in an office job. I need to stand up and move around regularly, so break up my PC work with a trip to the loo or get a drink every 30 mins. I stretch while the kettle boils and so on.

[Flipflop50]

Wolfiefan Now the violent crime definitely sounds good. 😜

WingingItSince1973 I have to see the doctor in 2 weeks so I will ask. Thank you

It’s quite scary at just how many other things are linked to fibromyalgia, are all these things in my future?

Do you work?

[WingingItSince1973]

Hello. Welcome to 'the club' When I was having my bloods tested for elimination before my diagnosis they also discovered I have parathyroid disease which can present itself same as fibro symptom wise. That is sort of under control at the mo but it's worth asking for parathyroid and calcium to be included in any bloodwork. I also have osteoarthritis in feet and hands. I was put on a drug called Lyrica (pregabalin) which I'm now weaning myself off as I have gained so much weight and it's now stopped working for me and I didnt want the dose raised again. I try and manage with natural products as much as possible and electric heat pads are a lifesaver. I'm waiting on a heated blanket today so I can wrap it around my hips and back and it will cover more of me 🤣 Try and eat as good a diet as possible and keep as mobile as possible. Even gentle stretches. I now have sciatica due to back spasms so am really feeling it the last week. I have prescribed pain relief from the doctor which is on repeat prescription. It's the fatigue I find so debilitating. I used to own horses and work but now I barely leave the house on bad days. My husband is very understanding but I can see it's getting him down when I cant participate in things. So my advice would be order some plug in heat pads from Amazon. Get some good vitamin supplements and ask your doctor for an all round blood test if they havent already done so xxxxx

[howdidigettobe50something]

A few years ago I developed post viral fatigue after a heavy dose of flu. I was unwell for weeks and getting out of bed became a struggle. I bought the book 'From Fatigued to Fantastic' and it was so helpful. I realised I had so many of the symptoms discussed in the book and ordered supplements based on what I discovered. It helped me so much and I eventually got back to normal. I still have periods when I dip again and if I return to the supplements I know that I will soon recover. I think there's a website too which I found invaluable. I hope you find support OP, and the understanding of those around you.

[Wolfiefan]

You are lovely. Blanket and wine sounds like a great plan. I may continue to binge watch violent crime TV too. 🤣

[Flipflop50]

Bloody family! You can’t choose them mores the pity!!

Blanket and wine and contact them in a few days. Here if you need us

[Wolfiefan]

Well I’ve just had a very unpleasant message from family trying to guilt me for not getting involved in a distressing situation any more than I feel I’m able. And for not supporting them by meeting up. I’m shielding.
And who supports me??
I may have a LARGE glass of wine tonight. If the pain doesn’t make me feel like being sick.
I wondered if a weighted blanket would help. I find a heavy one does. Weird because often just the duvet on me hurts.

[Flipflop50]

picklemewalnuts Thanks for the explanation

Elsiebear90. I have PTSD and other mental health issue so I have to monitor it carefully as the slide to the bottom is a long way.
You are definitely right about pain and wellbeing.

Wolfiefan rant away it good for you not to bottle it up!

LionKingOrTigerKing If your pain is so bad bed it is I use an electric blanket for about 2 hours then try moving. Maybe it’s time to speak to your doctors for some pain meds that you can take when it that bad

The thing is a balancing act. I find myself reading the post nodding my head (which hurts) But strangling being lighter in myself as there are you guys out there that understand

[Wolfiefan]

I find heat helps. Covering myself with a blanket if I sit (yes in June) makes a difference. When it’s really bad I actually leave a walking stick by the sofa. Because if I sit down for more than a minute or two then I can’t walk without it.

[picklemewalnuts]

It's the 'standing up while looking like I'm 93' that gets to me! I'm so stiff, the first few steps look like I'm a puppet. And going up the stairs looks terrible, I haul myself up hand over hand.

If I sit still I don't hurt, but the longer I sit still the more it hurts to get up! It's a fine balance, cos being too up and about makes it hurt!

[BareGrylls]

Elsiebear90 some good advice there about chronic pain.
Without a doubt my pain increases when I am under stress - physical or mental.
I have had the worst pain ever in the last six months. I had chemotherapy which messed up my Rheumatoid Arthritis. Is some of it Fibromyalgia? Perhaps.
Pain all day everywhere drives you into the ground. It sucks the joy from life and makes me a miserable irritable person to live with.
Also it's invisible, people can't see just how much it hurts to stand up and walk or to hold a cup of coffee. They don't want to hear you moan about it so when someone asks how you are you just say fine thank you.
However bad it is though moving is better for me than not moving.

[Wolfiefan]

Oh pickle you are lovely. I didn’t expect anyone to reply. Last night I just needed sleep. On a day to day basis reading and rest and dog walking and knit/crochet (when I can) all help.
I have two dogs. One just a pup. The routine of having to get up with pup etc helps too.

[picklemewalnuts]

Having a stressful time definitely makes my neck and shoulder pain worse. The every other day phone calls with my mother are taking their toll right now!

What do you do to help yourself feel better, Wolfie? Hot shower? Romp with your dogs?
I sat with a heat bag on my neck last night. It did ease it a bit.

[LionKingOrTigerKing]

Hello 👋🏻 would love to join this thread! I was diagnosed last year. My pain is always worse in my legs- I feel like I've been hit by a truck. Just this constant aching burning pain deep in my muscles, and intense numbness. Suffering with insomnia too! The joys of fibro😩 has anyone got any suggestions for when I hurt that bad I can't walk?? I usually have to go and get into bed because it hurts that much. Haven't been given any pain killers or anything. I'm just on duloxetine

[Wolfiefan]

Well I’ve had a shitty and really stressful couple of days. Last night my pain was so bad I thought I might throw up.
Fibromyalgia I fucking hate you.
Nowhere else to rant and no RL support with this.
The sun is shining. Hope today is better. Hope you’re all having a good day too.

[TiffanyIceberg]

@Coulddowithanap there is no test for it, it is a process of elimination.

[Coulddowithanap]

Can I ask a silly question? My doc said I've got fibromyalgia after years of going back and forth from physios, xrays, MRI, etc. I don't know if it's just something they say when they run out of ideas! Is there a test for it?

[Elsiebear90]

Make sure you look after your mental health, I don’t have fibromyalgia, but I have chronic pain due to endometriosis, there is a huge psychological element to pain that people typically underestimate. People often hear this and they interpret it as “you’re saying I’m imagining my pain” or “you’re saying I caused my pain” that’s not true at all, but pain, the perception of pain and ability to cope with it can be massively influenced by mental health. My pain and the perception of my pain is much worse when I’m anxious and stressed. Try to stay active, I know it’s hard when you’re in pain, but the worst thing for me is sitting down all day or being in bed, my muscles get stiff and the pain gets worse. Take pain killers when you need them, but don’t take lots of them when you don’t and don’t abuse them as you can build up a tolerance (and it’s dangerous and you can become addicted), it happened to me when I was really struggling, I started taking co codamol every day and more than I should have been, after about 4 days it stopped working. I only take it when I really really need it now and it works a lot better.

Have a good diet, and try to keep busy if possible and not dwell on your pain (I know it’s hard, but it can make the pain and your mental health worse).