got some positive (kind of!) news today. I was sent for blood tests a few weeks a go and the results came back, turns out I have a very severe vitamin D deficiency to the point it would take one year+ of injections to get me up to the low end of normal! This explains why I'm experiencing such severe joint pains (and also my depression), so even though I still have fibro, sorting this out could help with the pain a lot.
Got to spend an hour outside in the sun every day, and have a follow up with the doctor in two weeks to review progress....so, while it's not great news, I'm taking it as a positive as something can at least be done about it!
Was also blown away by how wonderful the doctor was...not my usual GP, had only seen him once before. Was booked in for a 10 minute appt and he spent 40 minutes with me explaining things and helping me to understand fibro...think he's my guardian angel since no one else ever bothered doing that in the 8 months since I was diagnosed!
One of the new things I learnt...fibro is about pain perception...so, on one end of the scale you have the people who walk round with broken legs and don't even realise...and the other end is us fibro patients! Turns out when you are tired or depressed the brain doesn't have the capacity to block even more pain receptors...so fibro symptoms worsen...you probably all knew that but it was news to me! Will be trying my hardest to work on my sleeping pattern and treat my depression now.
Hope you're all as good as can be!x
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Deaf_Havana
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tiredalot40...fitting name?! Hopefully you can work on your sleep pattern and anything else that might be using up brain function so as you can suppress some fibro symptoms. It's not a cure, but it should lessen them at the least!
Hi there it is good news I have been takinhg the vit d for almost a year now and it really helped with the pain and especislly leg cramps and jrrking at night.
Hi my vit d level came back at 9 ( don't know the measurement) in January and on 50,000 ousto d2, 1 a week, I have been told that I will have to supplement for the rest of my life. Please let me know how you get on when your levels start to increase how you are feeling. I am still in pain with the fibro, and foggy but do feel different I tried to explain to my doc and the only way I could was to say that I feel more human but in pain ! I know that probably doesn't make sense. My mind feels more like doing things, like decorating or clearing out cupboards, and not soo depressed but still in pain from burning muscles and aches ,and jumbled words.and anxiety . I did try to decorate at Easter because I wanted to do it ( I think that's what I'm trying to say, I now want to do things) but I'm paying the price as I've been having a flare up ever since. Hope this makes some sense and would like to know how you get on x ps I hate being in the sun but will try this year
I didn't get told my levels, but I was told it was so low that taking supplements wouldn't even put a dent in it, and it was either get my bum out the house or learn how to inject myself with it! I chose option A haha will see how getting out and about goes though as am quite the hermit crab. I understand what you mean, you have the motivation mentally but not the physical energy to do things? I find that can be very stressful at times because you're ready to get on with it but your body has other ideas! Well done you for decorating even if it hasn't been great in the long run, I have a follow up in two weeks so will be sure to update with any medical results, til then results are all personal opinion based x
So glad to hear that you have at last had the answwer to why your symptoms were so severe and it must have been bliss to be with such an understanding doctor. I would definately try to book with that one again as it is good to have someone with a sympathetic ear and who will take the time to explain things.
The only problem I can see is you getting an hour of sun a day in the UK, I reckon you will need to buy a sun lamp.
Anyway, joking apart hope the Vitamin D, etc works quickly for youx
As soon as I got home I used the online booking system to make an appt for in exactly two weeks for with the same doctor, hallelujah for a doc that actually understands fibro!
He asked me what fibro was and I was so put off but I started listing the different symptoms like pain, fibro fog etc, and he stopped me and said 'no, that's textbook fibro, I mean tell me what YOUR fibro is' and I honestly wanted to hug him!
Having done my research the UK apparently provides sufficient sun rays to up the Vit D between 11am - 3pm in March to October, whoever wrote that hasn't spent a March or October in Britain!
I'll take these one at a time. You raise a lot of interesting points that could do with serious answers and you've had some good answers. Some have been covered elsewhere and I wonder if Emma or someone has their finger on a link. The fog stops me remembering where they are - apart from the website of course. I know we've communicated before.
Um, March to October 11 - 3 is the 4 hours when the sun is highest in the sky. (BST is NOT GMT. Noon sun is at its highest at 1 pm) Even in a cloudy day UV light gets through. So, taking precautions against skin cancer - there's always a downside, it helps. THE SUN IS AS STRONG now as it will be in August, even if it doesn't feel like that. Most of us cant get out much anyway. I know very few activities or jobs where you can get serious time outside with unprotected skin. Health and safety these days makes you wear protective clothing to cut the grass!
Vit D was one of the tests I had to eliminate causes of the pain I was in. Fibro is difficult as there's no definitive test. I was given 20 000 units a day to bring my levels back up and I cant argue with what the doc said. I do lots of outdoor activity but was still low at the end of summer last year.
Be careful taking lots of over the counter preparations, and when you talk to the same doc again ask if there's a way of raising levels that will work for you. Vit D deficiency (rickets) is a classic cause of pain so you don't need it on top of fibro.
I sincerely hope that you are feeling as well as you possibly can be today? I am so sorry to read that your vitamin D level is so low and I genuinely hope that it can be rectified for you.
Feeling in a very glass half FULL mood which is a lovely change to my usual 'glass 100% empty' mood A lot of what has always been a source of stress for me is having undiagnosed issues that can't be treated without diagnosis so it's lovely to at least have a direction to be going in treatment wise!
Hi, I know exactly what you mean. I am so stressed not knowing what is causing my pain. The Dr just says to me to concentrate on making myself feel better rather that trying to find a reason for the pain. But, how can I make myself better if I don't know what it is?
Deaf havana .. Good way of looking at fibro . Best advice I have ever had is to take each symptom and try and make it a little better . This vit D problem seems to be with most fibro sufferers my reading was 13 .I had an op to remove my left parathyroid as it was block with calcium which stop the vit D doing its job . I will have to take supps long term but all worth it . The way I explain it is my bones don't feel heavy like I am pulling someone else along with me .
Did you try supplements or injections or sun time or anything before having the op? Just wondering if that might end up being a road I have to go down.
Lovely positive post Deaf-Havana, it's great when you get a GP that understands isn't it? Mine is better than the Rheumatologist I've seen, so I guess we're lucky! I too am vitD deficient. Does anyone else have the issue of not being able to get vitD on prescription, or any advice on where I can buy them at a reasonable price? I can them prescribed if they also contain calcium but I can't take this due to other medical issues. May everyones glass stay half full. X
I was told tablets wouldn't make a dent in the deficiency so not prescribed any but my mum has decided to buy me some anyway (from Boots I think) because every little helps I suppose. Once I actually get them I can tell you the name if you'd like x
Hi, I get mine from Boots and they're quite expensive although sometimes on offer. I think you weren't prescribed as you can't get just vitD on prescription. I just wondered if there was anyone out there who knows of a cheaper supply source that Boots. Thanks for your reply though. X.
Healthspan are reasonable at about £8 for 240 D3 tablets and Chemist Direct have D3 on offer at the moment. There is another make at our local chemist but fibro fog has extinguished the name if I think of it I will postx
What a great GP. Not been explained to me in 25 years. Watched a programme last night about someone who has trained himself not to feel pain , so now official we are wimps ;-))
It's appauling how little knowledge most GPs have on Fibro isn't it. This one really went the extra mile. Said he wants me to focus on improving my social anxiety so I can take part in a support group which would provide access to hydratherapy and physiotherapists and occupational therapists that all have a special focus on fibro.
No that is why I have left the country. i was desperate and decided I needed to do something extreme so I have "left" my husband and moved to Malta. Speak to him for about an hour every day on Skype but difficult.
Rented a flat for 6 months. Specialist could only offer drugs with side effects and said he supported my decision and wished it was available on NHS.
My sister thinks I am a selfish bitch and friend thinks I am having a mid-life crises but I just want to be free of pain.
Well I think you are a brave and strong person who is wise enough to know you deserve a life free of pain, and did a thing most people would be scared by doing to get it! Your sister is probably jealous, or feeling rejected in some way, and lashing out because you didn't take her.
You should feel proud that you care about yourself enough to do something so drastic to get better, not all of us do!
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Pain clinic
Test results
Phew I am not alone.
New & feeling a tad lost 🙈
Suffered with Fibro for 20+ years, have now found something which really, really helps.
