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

Diagnosed last year. Still don’t really understand but having a reason for feeling like crap all of the time helps

Hello I’m another one! Diagnosed about 5 years ago now but in reality has it a lot longer. For me my symptoms include always being tired, constant pain especially in my hips, back, knees, ribs and neck, daily headaches and frequent migraines, intolerance to cold, noise, bright lights and touch. I also have Raynauds Syndrome. There’s probably other little ones as well.

I agree with others who say about pacing yourself, if I have a big night out or a hectic day I’ll pay for it with needing 2 days rest after. I also have afternoon naps whenever I can.

That's interesting, @MellowMelly. I'm going to follow up on that myself. Thank you.

@Wolfiefan
Years ago it was definitely an unknown condition and in my age generation it was often misdiagnosed as ‘yuppie flu’ or chronic fatigue syndrome.

Now, thankfully, they definitely have key considerations put in place in regards to going down the route of fibromyalgia as a diagnosis. The main one being widespread pain in the body/joints with no known cause that has been present for more than 3 months alongside digestive disturbances, and pain present when pressure points are pressed.

For those on here suffering with tummy aches/abdominal migraines/IBS alongside their fibromyalgia, I would recommend probiotics as there is a definite link between gut health and ‘Fibro moods’ as I call them. It takes about six weeks for the probiotics to start balancing the gut flora but it’s worth it.

A couple of things I've learned-

pacing is not 'having a couple of days off after a busy day'. Pacing is not getting worn out in the first place- taking that first day more slowly so there isn't a slump afterwards. It's hard and not always possible, but definitely worth aiming for.

Exercise can lead to slumps and injuries. Tai Chi is great because you gradually build stamina and strength, but are unlikely to hurt yourself in the process! Look for a class aimed at people with health conditions. If anyone wanted to start, I go to a class on zoom, I'm sure you could join.

I'm trying to add fermented foods to my diet, which is the original natural form of probiotics.

My biggest irritation right now is my neck- very stiff and tight. If I do stretching exercises to loosen it up it tends to get worse! Pah!

Wolfe, you talk about yourself like I do- your wrist being a drama queen!

I tried to get more active and did a salsa video with a friend. Cue my hip thinking it's critically injured and playing up for months. Then my shoulder decided to throw it's hat in the ring. As someone who hasn't done sport for many a year I get lots of injuries sports people get- shin splints, tennis elbow etc.

I recommend going to a good sports injuries physio if you can- ask them if they know about Fibro. Mine gives the problematic joints small movements to remind it that it's ok to move, it won't hurt. Then builds the movement up gently until my shoulder decides it's safe to behave normally again.

It's like an over excitability condition- the body throws up injuries and reactions at the first sign of a hint of a risk. 'Steady on there, that might hurt, stop now! See told you so!'.

Pickle you are so very right. It helps me in my head to keep the pain in the box.
I walk the dogs so I’m not completely inactive.
Bowen has really helped me. I’m looking forward to getting back to that. Can’t wait. I feel so much less stiff and sore and sleep so much better.

I'll have to look up Bowen. I've no idea what it is!

Just popping in as coping tips are always appreciated! Diagnosed for a year, I have spells where I’m fine until I fall into a hideous flare up. Used to be a personal trainer so this has been really awful. Worst pain is legs and feet here!

I’m rubbish at pacing, I’ll be honest. I’ve tried all kinds of different supplements but stick consistently to vitamin d3 with k2 and b12. Rheumatologist suggested omegas which I may try next but I have to be careful with supplements as they aggravate my stomach! Vicious circle.

I definitely agree with everyone about pacing. My daughter offered to cut the grass for me the other week while I was at work and I know what can happen if she doesn’t take things easy so I said don’t do it all in one hit. It can be done over two days.
She did it all in one day and hurt all over the body the next day. It’s very much about finding that right balance.
I’ve had a look at Bowen Wolfie and that sounds really intriguing!

While off down the rabbit hole in pursuit of Bowen Treatment, I came across this article www.healthrising.org/blog/2018/03/25/toxic-brains-frozen-spines-and-the-perrin-point-ray-perrin-me-cfs-and-fibromyalgia/

Their experience with their neck really resonates!

@picklemewalnuts
Now that’s really interesting about the toxins. When they ran the toxin test on my daughter she was running slightly higher than average in toxins such as antimony (found in paints, flame retardant materials, enamels amongst others) and lead so this makes a lot of sense.
We were told that for some reason her body doesn’t remove these toxins and that’s why they are above normal levels.

Wow it’s so good to hear I am not alone. Sorry I disappeared but the pain in my neck and head got to much so I had to go the bed for a while.

Keep going to the doctors with your symptoms. I did this because I thought I was going mad. I go a reasonably small supermarket and when I get home I am shuffling because of the pain in my feet and
legs the rest of the day is a right off and the following day is a rest day. Then the pain in my neck and head and chest started and I was taken into hospital with a suspected heart attack it wasn’t but they couldn’t find the cause. The pain in my neck and head are constant but the pain in my chest comes and goes.

I have had PTSD and damaged hips and
pelvis for about 15 years the doctor asked if anything change in December when I went into hospital it’s only now thinking about it they I realise there was something that may have been.

Sorry to go on

Interesting. I had a bad car accident years and years ago. Someone smashed into my stopped car at great speed. Had awful whiplash and always had neck issues since.

My last 10 years have been very stressful (foster carer placement breakdown, dad's last illness and death, whiplash and a local political thing). My neck was bad before the car crash, but that finished it off!

Truth be told, I've always found life stressful. Poorly parented, as a PP mentions. I've always had Migraines, IBS, depression etc. Foolishly I'm also quite determined and stuck with stressful situations that I should have got out of! For example being a foster carer and taking on huge and complicated situations!

I'm sure it's chicken and egg, that I'd have been able to be more resilient in different circumstances.

picklemewalnuts Lots of stress does seem to track with it. Hine sight is a wonderful.

My GP told me that Fibro often results after an injury or an illness. I got shingles and suffered from a frozen shoulder within months of each other - and he thinks that triggered the fibro. This was 10 years ago. I have learned to live with it, and manage it.

I definitely find that I must not push myself, so on a good day, I do about 80% of what I feel I can, and then stop, even if I think I could do more. So, 30 mins gardening instead of an hour, a 20 minute walk instead of 30 minutes...this really helps. Once I'm exhausted, it takes ages to recover, so I try to avoid getting to that point. However, I am better for moving around, even when I ache all over.

I'm better in the summer than the winter, and my symptoms improved loads when I lost a lot a weight last year - less pressure on joints perhaps? I find a wheatbag helps with the pain in my legs. And I take CBD capsules when I'm having an attack, which helps too. My hips are sometimes so painful that I could could cry.

A couple of years ago I could hardly get out of bed and was worried about getting to the loo in time. I felt so pathetic and helpless, it was horrible. A flare up could last two weeks, sometimes more.

I do understand how you feel, all of you.

I started with symptoms after having had a bad virus. Though, in retrospect, I feel it had been sitting dormant for years. It manifests in swollen tissue around my armpits; stiff neck and shoulders; numbness in my fingers; Reynauds; IBS; candida/IBS/leaky gut; migraine; and a general feeling of achiness and malaise.

Having said all that (!), I can manage it with "mind over matter" a lot of the time. And yoga, and vigorous, but low-impact, exercise.

By far the best I ever felt: after being on a "Vata-pacifying" ayurvedic diet - but, boy, was that hard to stick to!

Sorry another question.

My feet hurt all the time. I am looking for shoe ideas that look nice with a dress and general foot wear advise please

I've found trainers are much more comfortable than anything - and Adidas or Converse with a dress can look great, depending on how formal your setting is.

Thank you BertiesLanding. I will cross the more formal bridge when I come to it xx

I wear these hotter ones, and clerks 'unstructured' metalic flats. Not trendy, but fine with trousers. And ok with long summer dresses.

I also wear shaped Flipflops around the house so I could go for a jewelled shaped flip flop in the evening.

The key for me is thick squidgy soles for shock absorption, and a shaped sole. You can get an appointment with a bio mechanical podiatrist (?) through the GP.

I live in Skechers, even a change of shoes or heel heights causes a flare up in me. It is very frustrating.

@Flipflop50

I agree with BertiesLanding, trainers are great. My daughter has had great relief with Nike Air as they have an inbuilt arch support and the bubble cushion. Also fitflop and Skechers like @TiffanyIceberg said.

We also got some inserts made for her which helped with other shoes.