Fibromyalgia, how do you cope?

[Longlowdog]

To my eternal shame I have been off work at my day job for 7 weeks. Constant pain over the whole of my back, chest pains and shortness of breath with occasional pins and needles in my arms and legs. The doctor began with a diagnosis of costochondritis thinking it was viral but has now told me he thinks it may be fibromyalgia. I'm reduced to calling a breathless walk round my sheep, an hour of lawn mowing and/or a scant handful of sheep shorn over a day a success. It is doing my head in and the doctor has said I may just have to get used to living like this. He has already suggested I may have to make major lifestyle changes.
I won't get a specialist appointment for 4 months so don't really have anyone who suffers to bounce stuff off so if you have it how do you get by? Do you ever get days with no pain when you feel great?
What has your experience been with this condition and how well did you feel the N.H.S dealt with it?

 

[Princess Pooper]

Hi, I don't have fibromyalgia although I know someone who does and I now he struggled at first, so my sympathies.

I do know what it's like struggling with a new condition that not many people understand, especially when you have a long wait to see a consultant. That consultation can be disappointing too, you may come away feeling that they haven't told you a lot.

These health unlocked forums can be useful, although as every where there are some people just best ignored. https://healthunlocked.com/fibromyalgia-action-uk . It definitely helps having a fellow sufferer to talk to, I was really pleased when I found someone locally that has the same rare rheumatic condition that I have (scleroderma) and we sometimes meet up for a coffee and vent!

Fibromyalgia Action UK also have a support helpline although I think they's a bit short of volunteers to run it at present, I assume you've looked that their website? Often, consultants just refer you to the relevant charity's website! http://www.fmauk.org/

 

[Longlowdog]

To be honest I've steered clear of the forums and only looked at the NHS website. The forums seem to have a strange mix of folk who are doom mongers and others who seem to delight in telling folk how miserable they are. What I want is a diagnosis and a way to move forward. I can't stand the idea of having this label for life.
I will however check out the links you have so kindly provided.

 

[Princess Pooper]

To be honest I've steered clear of the forums and only looked at the NHS website. The forums seem to have a strange mix of folk who are doom mongers and others who seem to delight in telling folk how miserable they are. What I want is a diagnosis and a way to move forward. I can't stand the idea of having this label for life.
I will however check out the links you have so kindly provided.

Forums can be OK as long as you filter info - which you are obviously already aware of, but they can cause anxiety if everything written in them is taken to heart! Sometimes the NHS info is a bit basic - if you are diagnosed you will want to know as much as possible and this is where the charity websites can be useful.

At least nowadays you should get copied in to any hospital letters between the rheumy and GP, it's really frustrating that sometimes the last person to know any letter content is the patient and some info you don't get to know. I complained that I knew more about blood tests on my cows than on my own blood! I've sorted that one now by having my regular blood tests at my GP practice even though they are for secondary care, and making sure the results get copied to my GP record so I can view them online.

 

[MissSteak]

I have fibro. I'd say the best advice would be to accept it, and learn your limits if what you can and can't do. Don't fight the tiredness or pain, as it will just make you feel worse in the long run.

I take pregabalin which dulls the nerve pain along with other pain relief. Been on it since October and if does help, but it isn't a miracle cure as that doesn't exist.

Recently I've found pilates helpful, the gentle stretching helps ease the tension in muscles we grip when in pain.

I recently had a bout of costochondritis, having asthma and hay-fever didn't help. Taking antihistamines helped me breath easier.

I take a range of supplements, magnesium being a huge benefit. I take tablets, and use bath salts as they are the best way to get mag into our bodies. You can also make or buy magnesium spray to skoosh onto skin.

I also have a dreamland heat pad which is a god send for sore body parts, heats up quickly and moldable.

Sketchers trainers help my feet, far more comfortable to wear at work.

It's taken a while but I am beginning to realise that lambing, showing sheep, partying, heavy horse work is now out of the question. I can still do a bit of lambing but I'd need to work out easier management systems so I could use the energy I have wisely.

I have found CBD lollipops soothing too, and giving up caffeine. Tesco decaff tea bags are quite fine. I should give up sugar, but I don't want to. Not giving up dairy for love nor money. Alcohol is a no go, doesn't mix well with the medication.

There is a good support group on Facebook. It's a closed chat. Useful for advice, and comfort that it's not just you that's kaput.

 

[Longlowdog]

I'd like to say a public thank you to those lovely people who have replied to me openly and in messages. It is very reassuring to know there are folk who are still managing to keep doing the job they love.

 

[MissSteak]

How are you getting on now @Longlowdog ?

 

[Longlowdog]

@MissSteak thanks for inquiring.
After 6 months of no change I went back to my health centre and by chance saw another doctor who instituted another round of more rigourous tests. The outcome of which is that I was diagnosed with myeloma. It is similarly debilitating but I have no best before date yet. It isn't nice having a cancer diagnosis however myeloma for me anyway having been caught early allows me the luxury of time to accept what I have and opened my eyes to all the good things in my life. All I've done, the people who have helped me along the way, the places I've visited and I think it's fair to say I now enjoy every day with a heightened passion.

 

[MissSteak]

I'm sorry to read your news @Longlowdog I hope you're doing as well as you can be.

 

[Longlowdog]

@MissSteak thanks for your lovely comment. As these things go it could be far worse. Yeah I lose my puff quickly, have aches and pain and fatigue but no best before date. Bloods are stable, doctors and nurses I see every month are amazing. I know I'm ill, I feel I'm ill sometimes but I don't keep seeing the Grim Reaper out of the corner of my eye. My better half has early onset Parkinson's, I plan to be around to give her a hand for a good while yet.

 

[Agri-WMH]

Late response but hope you are doing ok, just incase anyone else reads this who is struggling with fibro-

I was diagnosed with fibromyalgia 4-5 years ago, I was working in a factory and had rejoined the army in the TA and thought I was just doing too much, ex regular army too so not been kind on my musculoskeletal system.

Multiple specialists and blood tests later and fibro was the diagnosis, I have never taken anything more than 400mg tabs of ibuprofen to help with the joint and nerve pain, and find a lot of the time I end up fighting through it, probably not a good thing to be doing, mole work kills my knees off in its peak mid winter with cold ground and long days on my feet but otherwise I’m not too bad, it’s weird though, it tends to flare up for 7-10 days once a month

docs also claim I don’t have arthritis but a podiatrist screams different, some people say the 2 can go hand in hand or can be misdiagnosed when it’s actually rheumatoid arthritis, anyone who’s suffering and reading this never struggle alone, speak to someone like the OP did on here and I’m always happy to chat in messages/on the phone/meet up if local if anyones struggling, especially with the horrible feelings that a new diagnosis can bring about

 

[jamesy]

After struggling the last year or so with constant aches & pains along with not sleeping my doc diagnosed me with fibromyalgia, probably triggered by a horrible attack I had from a cow spring 2020 which hospitalised me for a few days.

Not feeling I could do another spring of lambing & calving I’d already decided to sell/cut down my breeding stock when my doc diagnosed me. By changing how I farm I hope to be able to keep muddling along at an easier pace.

Anyone with Fibromyalgia has my sympathies as it can be very frustrating that you can’t always crack on as you’d like to. I’ve been a retained Firefighter for the last 14 years or so and I feel the time is probably coming where I’ll need to leave that behind as my cardio is not what it was.

 

[Macsky]

Is there any suggestion of a link with diet?
You hear a fair bit nowadays here and there suggesting a carnivore diet for the relief of autoimmune/inflammatory disease. I would consider it if it were me, I had a whole list of issues that largely resolved themselves just by eliminating gluten from my diet.

 

[Flatlander]

Is there any suggestion of a link with diet?
You hear a fair bit nowadays here and there suggesting a carnivore diet for the relief of autoimmune/inflammatory disease. I would consider it if it were me, I had a whole list of issues that largely resolved themselves just by eliminating gluten from my diet.

You could very well be onto something there. I’ve read a few times about cooking oils and margarines being linked to joint inflammation. Tried to cut them out but not easy with it in virtually every we eat. Just got back from Cuba and a totally different diet with no chocolate crisps or margarines only butter and my feet were painless. Back to marg on my bread and feet are stiff and sore.

 

[Macsky]

You could very well be onto something there. I’ve read a few times about cooking oils and margarines being linked to joint inflammation. Tried to cut them out but not easy with it in virtually every we eat. Just got back from Cuba and a totally different diet with no chocolate crisps or margarines only butter and my feet were painless. Back to marg on my bread and feet are stiff and sore.

If you break food into two categories- food & food like substances, it really opens your eyes to how much crap we consume, I reckon most of the stuff that didn’t exist up until the last 50-60 odd years is what’s doing the damage, what else can it be that causing the universal increase in ‘non-communicable’ disease? To quote Frank Newman Turner, “health goes in at the mouth”!

 

[Agri-WMH]

I had a bit of a interesting revelation on fibro last week whilst on a first aid course.

It turns out that many of the symptoms of Lymes disease match that of fibro and Lymes disease is often mistaken for ME or fibro, suffice to say given my lifelong hobbies, previous and current employment I’ve booked in for the relevant blood tests at the docs, worthwhile consideration for some, if not most farmers.

(Although I am told the nhs tests often fail and going private is the best option with a “Lyme literate” doctor)

 

[Macsky]

I had a bit of a interesting revelation on fibro last week whilst on a first aid course.

It turns out that many of the symptoms of Lymes disease match that of fibro and Lymes disease is often mistaken for ME or fibro, suffice to say given my lifelong hobbies, previous and current employment I’ve booked in for the relevant blood tests at the docs, worthwhile consideration for some, if not most farmers.

(Although I am told the nhs tests often fail and going private is the best option with a “Lyme literate” doctor)

I’ve read that ivermectin has been used successfully in the treatment of lymes

 

[Agri-WMH]

I’ve read that ivermectin has been used successfully in the treatment of lymes

not heard that one, I suffer with arthritic symptoms and apparently a 90 day course of antibiotics can clear these if positive with Lymes, so I’ve vaguely got my hopes up.


Deer can essentially flush ticks of the Borrelia bacteria so maybe I’ll get myself a transfusion with a roe

 

[Macsky]

not heard that one, I suffer with arthritic symptoms and apparently a 90 day course of antibiotics can clear these if positive with Lymes, so I’ve vaguely got my hopes up.


Deer can essentially flush ticks of the Borrelia bacteria so maybe I’ll get myself a transfusion with a roe

Interesting

 

[BuskhillFarm]

I’ve been diagnosed with cfs same as ME/long covid and a dear cousin of fibro.

Lot of stress at the time job and poor home life coupled with a very bad bout of flu and relapse of flu going back to work too early. That’s 10 years ago now

I’ve done cbt, counselling, diet changes (York test very good for intolerances) and acuapunture which I still do. Lots of little things help but I’ve still about the energy of a obese 75 year old. It sucks but I’ve tailored my life to suit. Quite my job and look after my boys, do arable instead of beef and have a Cattery.

Think I learnt more about diets and my self in the 2 years after diagnoses than the rest of my life.