Anyone else with fibromyalgia?

Sprat

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I have fibro and it’s kicking my ass at the moment.

I went for a jump lesson today which was good, but in howling winds and freezing temperatures. By the time I’d finished, towed home, mucked out etc. I am totally beat.

It’s been like this the last couple of weekends when going out and doing something fun with the nag, I just end up good for nothing for the rest of the day.

I can’t seem to find the energy to do anything but lie on the sofa. I’ve got so much to do (housework & decorating) but I just can’t do it.

Any other fibro sufferers have any pearls of wisdom or pick me ups they can share?

Feeling very pants.
 

Vodkagirly

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Don't be hard on yourself. I haven't got fibro but after going to a jump lesson, Im also on the sofa and don't really want to move. Fibro must make it a lot worse for you though.
Winter is tiring for everyone, hopefully spring will be along shortly.
 

Leo Walker

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I am sorry you feel pants. I wondered if you have had a recent blood test for Vitamin D?
And B12, iron, ferritin and thyroid. Then you must get the results and check them yourself. I was misdiagnosed for 20yrs. My friend was misdiagnosed. I genuinely only know people who get labelled with fibro when doctors run out of answers.
 

Sprat

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I am vit d deficient, I take tablets for it but doesn’t seem to make much difference. I’ve tried all sorts of diet related tests, I’ve just cut out loads of foods for weeks on end with no noticeable difference. I think unfortunately I just have fibro.

I can deal with the joint aches etc, it’s the fatigue that completely wipes me. I wish there was something I could do to help it but so far the only thing that works is rest. Which is fine, but I get bored very easily and want to be up and about!

LeoWalker, interesting that you mention b12, I was reading an article a few weeks ago that mentioned b12 deficiency presenting symptoms similar to fibro. Worth a shot I suppose!

*edited as post got cut off halfway through
 

Leo Walker

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They are identical, and there are so many people "cured" by treating B2 and vit D deficiencies. Worst case scenario it wont do a lot, best case scenrio, you get your life back, so worth looking into! If your vitamin D comes from the GP it wont be of sufficient quality or quantity to make a difference.

If you are on Facebook I can recommend a decent vitamin D and a B12 group that will talk you through what you should be taking. B12/vitamin D and thyroid tend to go hand in hand.
 

Red-1

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I am vit d deficient, I take tablets for it but doesn’t seem to make much difference. I’ve tried all sorts of diet related tests, I’ve just cut out loads of foods for weeks on end with no noticeable difference. I think unfortunately I just have fibro.

I can deal with the joint aches etc, it’s the fatigue that completely wipes me. I wish there was something I could do to help it but so far the only thing that works is rest. Which is fine, but I get bored very easily and want to be up and about!

LeoWalker, interesting that you mention b12, I was reading an article a few weeks ago that mentioned b12 deficiency presenting symptoms similar to fibro. Worth a shot I suppose!

*edited as post got cut off halfway through
I had similar symptoms; heart palpitations, sore joints and was absolutely wiped out. I struggled to do not a lot, and was exhausted from it. Finally my Vit D was taken and I did not have a level detectable :eek:.

The tablets the GP gave me were no good, I went on the Vitamin D wellness group and went onto D3 10,000 units a day, but they must be taken with Vitamin K2 to be effective. They recommend a particular brand and also that it is taken with fat. I also went onto B12, taken with Folate. I also went onto magnesium. With those and a probiotic, I am transformed.

It took a while for my levels to come up, and with that level of Vit D I also have blood tests to make sure I am not over doing it.

I am now energetic, have lost almost 2 stone in weight, have normal aches and pains but not the all consuming pain. I have started cycling, running, swimming...

https://www.facebook.com/groups/736193223162033/
 

Pearlsasinger

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They are identical, and there are so many people "cured" by treating B2 and vit D deficiencies. Worst case scenario it wont do a lot, best case scenrio, you get your life back, so worth looking into! If your vitamin D comes from the GP it wont be of sufficient quality or quantity to make a difference.

If you are on Facebook I can recommend a decent vitamin D and a B12 group that will talk you through what you should be taking. B12/vitamin D and thyroid tend to go hand in hand.

I have a friend who was diagnosed with an underactive thyroid many years ago, she has recently been diagnosed with VitD deficiency and suddenly feels much better than she has done for years. Tbf her Gp does seem to have prescribed more VitD/better testing than many do. But she had to ask for the test herself, after her adult son who has been treated for several years for ankylosing spondulitis was told that his diagnosis was wrong and his actual problem is VitD deficiency.
 

scats

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I have lupus, but one consultant was also convinced I have fibro. I’m not really sure about that, as I have symptoms very different to other friends wi5 fibro, so I assume my symptoms are largely lupus based. I was also found to be extremely vitamin D deficient. Doctors prescribed me some, but a bit of research showed it wasn’t nearly enough, so I ordered my own. I’ve lost over a stone and a half since starting on the vitamin D.
Also, through the advice of people on here, I started on B12. I do think it’s made a difference to my general fatigue and stamina levels, which is brill.
 

Leo Walker

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I have a friend who was diagnosed with an underactive thyroid many years ago, she has recently been diagnosed with VitD deficiency and suddenly feels much better than she has done for years. Tbf her Gp does seem to have prescribed more VitD/better testing than many do. But she had to ask for the test herself, after her adult son who has been treated for several years for ankylosing spondulitis was told that his diagnosis was wrong and his actual problem is VitD deficiency.
This makes me so angry! 20yrs I was misdiagnosed for. i am convinced my sister and her daughter have the same issues but they dont want to know. I need 10000mgs of vitamin D daily to stay at a sensible level. My GP wanted to give me 800mgs a day to correct a deficiency. No want waanted to give me B12 even though I was bed ridden. It took twice daily injections for 3 months to get better, then maintenance injections for life to stop it happening again.

I was put on thyroxine when I was just on the cusp of the NHS guidelines. When the vitamin D was at its worst no amount of thyroxine kept it under control. I got my vitamin D levels up and suddenly the thyroid issues stablised. I suspect if I had been treated before starting the thyroxine I would never have need it in the first place!
 

windand rain

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I have fibro have had for more than 20 years I do as much as I can I am a bit of a devil though as I refuse to give in. I don't sleep am very tired a lot of the time and feel like someone has pulled the plug out under my feet as I can feel the energy drain out of me usually when the adrenalin I keep running on has an opportunity to relax a little. I am B12 injections as have pernicious anemia. Have self treated my Vit D and take mixed multivitamins and iron, folic acid, vit K, magnesium as a support I do feel much better I am sleeping slightly better in that I don't see quite so many sunrises before I go to bed Due to an accident I also have to take tramadol which sadly I cannot now manage without as I get very bad restless legs and nerve pain if I forget it. I am not truly addicted as I don't have to have more and more for it to work the dose hasnt altered much for 10 years. OH is very good though as he largely speaking does the housework and cooking so I do get a rest from time to time I cannot stand for long hours and have the awful habit of not being able to keep my hand closed when carrying things so drop things. That has improved now I have had my frozen shoulder fixed but it still happens if I get too tired
 

Leo Walker

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W&R how often are you having the B12 injections? I am going to hazard a guess that its not nearly often enough. I know when my levels drop I get restless legs and its the most vile thing!

I'm another tramadol user, but I am very definitely a junkie at this point. Im ok with that. I dont take it for kicks, I take it to knock the physcal pain down enough so that I can function
 

Carlosmum

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My OH has problems with lethargy/tiredness and balance amongst other aches pains & tingles. He has had full neurology tests & they are happy to tell him he doesn't have Parkinsons MS or MND, but they cant tell him what he has got. He is 57 & sometimes moves as if he is 70. So its back to the GP again ( we are going to see a different one) and I will ask for specific blood tests for vitamin B and D. He is currently taking Vit D for his arthritis but I guess it may not be enough.
 

windand rain

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Nope no where near enough every 12 weeks I could tak pills but as I cannot absorb them I would be wasting my time I do eat food high in d and b12 but again if not absorbing it it wont help much
 
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I was diagnosed with fibro in 2015 but have been suffering from chronic pain most of my life. I had blood tests and I am also vitamin D deficient but I can't say I notice any improvement in my symptoms from taking vitamin D tablets (I am taking the dose the Dr recommended and have brought it up many times) so I stopped taking them as it was getting quite expensive on a student budget.

I am at uni 300 miles away from where my horse is kept so I barely ride at the minute so can't really comment on that sense. I frequently have to come home between lectures halfway through the day for a nap/lie down as I am shattered and sore. The more tired I am the more brain fog I get so sometimes I just give up with uni for the day as I'm not taking anything in. The painkillers I am on make me quite tired as well which probably doesn't work but they are starting to become less effective with my symptoms now so I am probably going to have to change them soon. Before I went to uni I was riding and competing 3 which was when I found riding quite painful, I'd get home from the yard in the morning after riding and I'd be wiped out for the rest of the day. What worked for me was wearing drug patches (they are polish so can't remember which drug they are but I got them when I was competing in poland) on the sorest places, dosing myself up with painkillers before I rode and not riding anything with a big stride as it aggravated my symptoms. I'd also have to nap between classes at shows or I wouldn't have the energy to ride properly.
 

Red-1

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I was diagnosed with fibro in 2015 but have been suffering from chronic pain most of my life. I had blood tests and I am also vitamin D deficient but I can't say I notice any improvement in my symptoms from taking vitamin D tablets (I am taking the dose the Dr recommended and have brought it up many times) so I stopped taking them as it was getting quite expensive on a student budget.

I am at uni 300 miles away from where my horse is kept so I barely ride at the minute so can't really comment on that sense. I frequently have to come home between lectures halfway through the day for a nap/lie down as I am shattered and sore. The more tired I am the more brain fog I get so sometimes I just give up with uni for the day as I'm not taking anything in. The painkillers I am on make me quite tired as well which probably doesn't work but they are starting to become less effective with my symptoms now so I am probably going to have to change them soon. Before I went to uni I was riding and competing 3 which was when I found riding quite painful, I'd get home from the yard in the morning after riding and I'd be wiped out for the rest of the day. What worked for me was wearing drug patches (they are polish so can't remember which drug they are but I got them when I was competing in poland) on the sorest places, dosing myself up with painkillers before I rode and not riding anything with a big stride as it aggravated my symptoms. I'd also have to nap between classes at shows or I wouldn't have the energy to ride properly.

Many people seem to need 10,000 units a day of vit D3, taken with Vit K2 to make the body use it correctly. But, on that high a dose, it is also important to have regular blood tests. I do mine by post, paying for a kit that then gets tested privately in a NHS hospital.

Many doctors seem to prescribe only 800 a day, or higher doses but vit D2 rather than D3, and they rarely put you on K2 as well...

I also believe B12 and Folate (together) are important as well as magnesium.
 
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Many people seem to need 10,000 units a day of vit D3, taken with Vit K2 to make the body use it correctly. But, on that high a dose, it is also important to have regular blood tests. I do mine by post, paying for a kit that then gets tested privately in a NHS hospital.

I also believe B12 and Folate (together) are important as well as magnesium.
I've tried saying to my Dr multiple times I think I need something else as I can't even make it through a whole day without needing to go to bed but they just aren't interested. Blood tests never show anything else other than Vit D deficiency. I graduate in june so I think I am just going to have to wait till I am home for good as my GP at home is fantastic but the one here is an absolute nightmare :(
 

Leo Walker

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Nope no where near enough every 12 weeks I could tak pills but as I cannot absorb them I would be wasting my time I do eat food high in d and b12 but again if not absorbing it it wont help much
You can get B12 and inject it yourself if you cant face the fight with the GP. You shouldnt have to live like this :(

Not being able to absorb B12 is a separate thing to vitamin D, so you can take that if its low with no issues. Eating food high in B12 is pointless sadly. Before injections people dried from it as despite eating kgs of raw liver a day they couldnt get enough into their system
 

Leo Walker

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I've tried saying to my Dr multiple times I think I need something else as I can't even make it through a whole day without needing to go to bed but they just aren't interested. Blood tests never show anything else other than Vit D deficiency. I graduate in june so I think I am just going to have to wait till I am home for good as my GP at home is fantastic but the one here is an absolute nightmare :(
First things first, get a copy of your blood tests. You can see what has been tested and what hasnt, and you can check the results. B12/thyroid/vitamin D etc all tend to be out of whack together, so you need them doing and you need to check them all. You GPs dose is not only poor quality but woefully inadequate, so get yourself on the vitamin D page Red linked. You dont need to post, just read and have a look in the files and start taking the right dose and the co-factors.

I lost 20 years of my life to this and you dont have to. What you do have to do is take matters into your own hands a little bit.
 

Red-1

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I've tried saying to my Dr multiple times I think I need something else as I can't even make it through a whole day without needing to go to bed but they just aren't interested. Blood tests never show anything else other than Vit D deficiency. I graduate in june so I think I am just going to have to wait till I am home for good as my GP at home is fantastic but the one here is an absolute nightmare :(
The reason that I pay for the private blood tests is because, in desperation, I took the higher dose by myself. I looked at the FB group Vitamin D Wellness...

https://www.facebook.com/groups/736193223162033/

They are not medically qualified, but I was soooooo desperate. I struggled to do anything. I left my job, could not drive a car with a clutch, was asleep for much of the day... In the end I decided that I would just do it as living like that was pretty miserable.

The FB group even has recommended products, not their own, but the ones without harmful fillers etc. The tablets themselves are not that expensive. The blood tests show me not going over the limit, but on 10,000 units a day I m holding at a healthy range. I am now energised, lost weight, have enthusiasm...

Of course, I would never say anyone should go against their GP, I am just saying what worked for me. It felt rather risky going against what my GP said, but it was in desperation and I did back it up with blood tests.
 

windand rain

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Yes am on the vitamin D protocol 10,000 units a day, magnesium, vit k and put epsom salts in my bath every night. Have been much more alive since I started it about 4 months ago but cannot get my head round self injecting B12 yet. I will but need to source it and wait for my pension in june so I can order it. Ponies eat my shared money just now
 
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First things first, get a copy of your blood tests. You can see what has been tested and what hasnt, and you can check the results. B12/thyroid/vitamin D etc all tend to be out of whack together, so you need them doing and you need to check them all. You GPs dose is not only poor quality but woefully inadequate, so get yourself on the vitamin D page Red linked. You dont need to post, just read and have a look in the files and start taking the right dose and the co-factors.

I lost 20 years of my life to this and you dont have to. What you do have to do is take matters into your own hands a little bit.

I’ve now booked a drs appointment for tomorrow so will try and ask for the blood test results, thanks ladies :)
 

Red-1

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I’ve now booked a drs appointment for tomorrow so will try and ask for the blood test results, thanks ladies :)
These are the Vit D levels I look for, be aware that there are 2 scales, one usually for the US and one for the UK, but nt always so you have to know which scale you are working with.

Vitamin D levels.jpg

Also, in the UK we recommend vit B12 levels that other countries would consider deficient. My B12 level was 400 which my Dr said was OK, but it was not. I have not injected, but you can supplement orally, but it is under the tongue melts or drops rather than swallowing a tablet.

Also, the Dr did not tell me that I had to take Vit D3 with fat to help it to absorb. So, if you have t with breakfast you have to have a fatty breakfast, or take it later with a more fatty meal. But, I was also told not to take the magnesium at the same time, I take that last thing at night.

I got quite geeky about it because it has made such a difference to how I feel and can perform. I am sure that some of what I do is hearsay, but as what I do now is working, I don't want to meddle with it in case I change something that matters.
 

Leo Walker

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Yes am on the vitamin D protocol 10,000 units a day, magnesium, vit k and put epsom salts in my bath every night. Have been much more alive since I started it about 4 months ago but cannot get my head round self injecting B12 yet. I will but need to source it and wait for my pension in june so I can order it. Ponies eat my shared money just now
If you look here you can request some for free. Might help ease you into it a bit!

B12 charity

The other option is sublingual tablets. Its no where near as effective but it will help if you keep the dose high enough. The cherry ones taste really nice as well :)
 
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I have ME and fibromyalgia and have found this thread so helpful. I've had blood tests for vit B which GP said were normal but I don't know actual figures and I'm not sure about Vit D. I'm now going to go back to them for more information. I have over the years supplemented with Vit B and magnesium but it would be nowhere near those levels and taken orally.
 

Leo Walker

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I have ME and fibromyalgia and have found this thread so helpful. I've had blood tests for vit B which GP said were normal but I don't know actual figures and I'm not sure about Vit D. I'm now going to go back to them for more information. I have over the years supplemented with Vit B and magnesium but it would be nowhere near those levels and taken orally.
Any less than 500 is deficient but with other issues you want it up over a 1000. If you were taking any sort of vitamin B supplement at the time it will skew the results. Basically if you have pernicious anaemia or a B12 deficiency, any B12 you ingest wont actually be absorbed properly so wont be any use, but will inflate your test results.

It just makes me so furious that so many people get diagnosed with ME/CFS/Fibro when they haven't had the basic tests and treatment they need. Unfortunately it seems to be a catch all for many doctors. We don't know whats wrong with you but you are definitely sick, so here you go, you have fibro. It cant be treated and we wont really do anything to help so go away please, oh and if you come back to us for anything we will wave our hands and say, but you have fibro, that's to blame.
 

Red-1

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My B12 was 400 and the Dr said normal. I nearly did not attend to it, as I was already feeling a lot better on the D3, but really felt the difference when I did.
 
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