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Fibromyalgia Action UK
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Physio

Hi guys, so my blood tests came back and once again my GP is blaming my pain and exhaustion (and the rest...) on low vitamin d levels. Still no closer to getting a diagnosis or being referred to a specialist. Getting to the point where I just want to give up...

my GP has asked me to start taking 1000iu of Vitamin D a day to get my levels up (again, after doing so for 3 years on and off!!!) and also suggested physio therapy for the pain... now I have heard that for some people physio makes symptoms worse... can I just have some experiences and advice please?

Absolutely devestated today, thanks guys x

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Hi Morg

I take Vit D & also a combined Calcium, Magnesium & Zinc supplement for cramp. I think I would have to stop them before I would be able to tell if they worked! I’ve been to the Pain Clinic, physio, osteopath, chiropractor, acupuncturist & hydrotherapy. I do Chair Yoga which I can dip into online when I feel able to. Nothing I’ve found really helps apart from the meds I take. xx

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I’ve been taking vitamin d on off for 3 years and don’t dont find it helps whilst on it or off it. Chari yogo sounds cool, I’ll research xx

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I found the Daily OM app by accident when looking for something to strengthen my pelvic floor! x

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My idea for you is ask to see a different GP at the surgery if the person who says Physio has not investigated you situation by sending you to a specialist by now.In terms of if Physio makes things worst that really depends on the exercises given. Mostly they have sheets you take home to practice. If you find you hurt more tell them after going back before all your sessions are used up.I do pilates with others in a hall nearby. The best bit is the teacher is a Physio and knows about Fibro!

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Sounds like there’s nothing to lose really! I’ll look around for gentle classes x

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Chair yoga or therapeutic yoga is phenomenal. Just make sure the instructor understands what fibromyalgia/ costocondritis is as you could easily over stretch. 🙏🙏

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My advice fire you GP and find one in your area who is more thorough. What is your vit.D level at? Has he even checked it since this has been going 3 yrs now? ........I’m sorry I just got back from saying goodbye to my dog Josy. My trend of thought is gone. I would suggest asking people in your area for a suggestion for a good GP.

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I have had endless blood tests the last 3 years checking my levels. I bring them up and feel no diffferent then they drop and I feel no different. My GP is leaving at the end of March so I’ll be assigned to a new doctor who I hope will actually listen and investigate everything as a VitD deficiency doesn’t explain all the symptoms!

I’m so sorry for the loss of your baby, I recently had to say goodbye to my cat. Such a hard thing to do, thoughts are with you xx

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My vitamin D is always low. I’m on 10,000 iu a day now and I hope my blood levels come up to normal now! If not - well, something is off. My doc just told me low vitamin D can lead to depression and didn’t say anything about my fibromyalgia. I think it’s good you are getting a new GP.

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I’m starting to think everything gets blamed on low vitamin D!😂

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Taking that amount of VitD suggests you would benefit from taking the co-factors - magnesium and VitK2-MK7. Magnesium works with VitD in the body - research the magnesium that is right for you. VitK2-MK67 directs calcium away from the bloodstream and soft tissues and into bones and teeth. Taking VitD encourages improved uptake of calcium from foods and too much calcium is not good. Caution required if you are on blood thinners with K2 ...

also VitD is fat soluble so take with the fattiest meal or take a gel capsule containing olive oil :-)

As your VitD is low it could be that other vitals are low - like B12 - Folate - Ferritn. Also reading your Bio and earlier posts I wonder how your thyroid levels are ? As you have auto-immune issues then has Hashimotos also been eliminated ? - auto-immune thyroiditis. Low VitD often accompanies auto-immunity and illness. I have Crohns - Hashimotos - had Gut TB - all conditions linked to low VitD.

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Everything else has come back fine. Just vitamin D being low. Thyroids are normal apparently. Thank you for the advice x

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As mentioned before you really need to have copies of your results with ranges to see what your GP means by normal ... TSH around 2 & FT4 & FT3 in upper part of range. Thyroid anti-bodies should also be tested to rule out Hashimotos - the most common thyroid issue globally. Normal is an opinion rather than a result ... it's the word we all want to hear. 😊 - but we also need to monitor our own health ...

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Thank you Morg333, sorry for the loss of your cat.🐈 Your cat and my dog are getting to know each other. 😊💕🐶🐈🐾🕊👼🏻

Do you know what your vit.D level? Hopefully this new GP doctor will be a good thorough doctor with a fresh pair of eyes 👀 to look past the vitamin D levels and get to the bottom of what is going on and get you on the right treatments. 😊💕🦋

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I’m sure they are!! And yes I think it might be the best idea. My levels are 56 as of 2 weeks ago. Started taking the vidD tablets again yesterday! Thank you 🥰

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56 is in the normal range for vit.D level. That shouldn’t be cause of your symptoms you are having. I hope your new GP is on top of things for you. 😊💕🦋

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I’m so sorry you lost your pups. My hear reaches out to you.

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Thank you Idramjet.

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My heartfelt condolences about Josy. Cherish those woofy memories,the tail wagging, the pleading cuddle me when wet eyes, the why can't I come face,and the best of all what do you mean i can't have another treat/bowl of grub/ walk when I have just finished one!

Big gentle hugs on your loss

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Thank you again Skit. 😊💕🐶🐾🕊👼🏻❤️🌻🦋🌷🐕💜🐩

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Always ask for copies of your test results with ranges - they are legally yours. You can then monitor your progress and check what has been missed ..

VitD is good around 100 & supplementing is according to your results. VitD is fat soluble and best taken with your main meal or wth some good fats. VitD is more than a vitamin and is a steroidal pro-hormone and anti-inflammatory. I would double your dose and re-test at the end of winter.

I take VitD in a gel capsule containg olive oil from Amazon.

Research has shown that good levels are required to prevent so many conditions. There are Prevention Charts showing levels required in the link below. Both sites are American so levels are measured differently. Divide your UK result by 2.5

grassrootshealth.net

vitamindcouncil.org

Hope the Physio works well for you & you find some relief.

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My levels are 56, my GP wants them to at least be 75 so I’ve been asked to take 1000ui a day... no follow up blood test required though...

I’ll take a look! Thanks x

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vitamindcouncil.org/i-teste...

In the link above you can see that to reach a level of 40 ng/L/100pmol/L - a dose of 2,000 IU's is suggested. American level / UK level

There is also information on the website about the other nutrients needed to work with the VitD - magnesium and VitK2-MK7

Only by re-testing will you know if you have improved your levels - which are not horrendous - I have seen worse :-) City Assays in Birmingham send out Postal Testing Kits if your GP will not oblige. Website by the same name.

Are you low in any of the other vitamins and minerals ?

It is possible you have not had an improvement on VitD as your dose has been too small. I take 5,000 IU's and I live in the sun ! 2500 IU's when I test around 60/150 - usually after the summer.

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This is great information to know! I never knew Vitamin D is so important.

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Sorry your having a rough time, I take multi vitamins and Turmeric with black pepper and bioperin, it helps maybe worth a try. Hope you feel stronger soon.

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Might give it a go! Thank you x

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My problems the same extreme fatigue brain fog depression pain hands knees wrists blood tests clear had tiredness two yrs can’t go out feel tired sometimes can’t sleep but still exhausted low mood doctor said it’s medication I’m on

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Horrible isn’t it! Feels like there’s nothing to ease it

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Hi. After years of Fibro symptoms and not even aware of the illness, my GP referred me for Physio. I had first appointment and my leg pain was numbed is the only way i can describe it but 20 mins later i was in even worse pain. I went to 2nd appointment and explained. They then referred me back to GP and gave me a brochure about Fibromyalgia to see if i thought it could be that. GP then referred m to Rheumatoligist (not sure of spelling) and i got the diagnosis there and then. They wrote to GO with meds suggestion. Hope you get what you need. Blessings.

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My mum and dad have both said that the physio is a good step forward as they might be able to suggest something else or say it’s something else and refer me else where. My Nan has rheumatoid arthritis but my tests came back clear.

Thank you for your comment xx

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Hi morg333, I have Infrared light therapy nearly everyday. I get the vitamin d I need from that instead. All those vitamin d pills and drops made my stomach upset.

I do yoga, started off with therapeutic yoga though, and aerobics, one or the other every day. I do have to push myself through the pain some days but boy am I glad I do.

You could try going on Prozac for the pain( lowest dose) I was on it for 6 months and it really put me back on track and made me feel capable of sorting the good from the bad out. For me, apart from a few headaches, Prozac was the least troublesome prescription I was given. Least, if any, side affects.

Deep tissue Massage therapy helped unbelievably.

Hot tubs, heat and a change in diet really often helps. I eat no sugar , caffeine or alcohol.

Hope your pain subsides soon. Much love

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Wow so much to try!! Thank you for your suggestions, I’ve taken vitamin d pills before and I’m fine on them. I’ve not heard of Prozac so I’ll have a read into it.

The change of diet really seems to help, so I’m going to give that ago! Cutting sugar might be a bit hard 🤣 thank you so much 😊xx

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