Fibromyalgia or vitamin deficiencies?

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Fibromyalgia or vitamin deficiencies?

Postby snowwhyte » Sat Jul 26, 2014 10:43 pm

Hello everyone,

i don't normally post on forums but i think that my family and friends are getting tired of hearing about my health issues.
I'm 31, single, with no children and a love of traveling. My problems began 4 years ago with a chest infection that refused to go for four months. After the chest infection came the eye infection which lasted eight months. After that came the pain. i''d wake up with morning stiffness and get random joint and muscle pain throughout the day. i started getting migraines which would last three days. i hoped it would get better by itself so i put off going to the doctor for six months. Finally i saw my GP who ran some blood tests and found nothing. She wanted to run more tests but i was due to go traveling to Australia so she said to find a doctor there if i didn't get better.

In Australia i started to feel better for a while but then the pain came back. Then it went away again then it returned. I kept cycling through being ok and being in pain and exhausted.I was in Australia for two years and i loved it but there were definately things i wasn't able to do because of my pain and fatigue. Towards the end of my trip i had the choice between heading on to New Zealand or returning home. I was feeling so bad i decided i had to come home and get myself sorted.

My GP did more blood tests but said she didn't expect to find anything. She asked if i'd heard of fibromyalgia, which i hadn't. I started reading about it and it matched my symptoms. My results came in and i had a minor vitamin D deficiency (30) so i was told to take a supplement for a year. I was relieved to have such an easy fix but unsure if a minor deficiency could cause so much pain. I started taking high dose vitamin D but kept getting worse. i started getting worrying neurological symptoms. I had dizzy spells, memory and concentration problems, i was dropping things, having problems walking, numbness in my arms and face, tingling and burning sensations, hot and cold sensations.

I was really struggling and very worried. i was living in a different area so saw a different GP. More blood tests which were normal including my vitamin D which was now excellent. The GP said he'd refer me to a rheumatologist or neurologist but there was a long waiting list in the area and i might be better off going through my old GP. I went back to my old GP and asked for a referral and a vitamin B12 test because of the new symptoms. She agreed to both.

My appointment with the rheumatologist is in two weeks and my B12 came back normal. i was taking a multivitamin though and this can affect the accuracy of the test. I decided to take a higher dose vit b12 supplement anyway and within a few days my neurological symptoms went away. i still have some pain and fatigue but i'm thinking better, walking better and feel so much better. i spoke to my doctor about it and she said if i stop taking the supplements for three months she will retest my vitamin b12 but i don't want to risk my symptoms coming back.

i am worried that it might be a coincidence and i could just be in a good phase. i am very confused and i guess i will have to wait and see what the rheumatologist says but i want him to say its a vitamin b12 deficiency because i would like to go to New Zealand in September :-)

Anyway, apologies for the long post. I have so much running through my head its nice to get it all out.
Last edited by FluppyPuffy on Sat Jul 26, 2014 10:56 pm, edited 1 time in total.
Reason: Split larger paragraph into smaller ones for easier reading.
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Re: Fibromyalgia or vitamin deficiencies?

Postby FluppyPuffy » Sat Jul 26, 2014 11:31 pm

:cow-wave: :cow-wave: and :welcome: to our little sanctuary :cow-wave: :cow-wave:

Sorry to hear what you've been experiencing, with such random symptoms and problems, plus so many possible conditions sharing them, it can be extremely confusing about just what might be the root cause of them.

Whilst a lot of what you have described could be attributed to FM, it is also possible that the low Vitamin D level could have contributed to how you were feeling. And whilst for some bringing their Vit D level back up to a normal range can help ease things, it doesn't always work in the same way for everyone unfortunately.

As much as I'd love to be able to fairy_dust fairy_dust fairy_dust fairy_dust fairy_dust and tell you what is making you feel as you do, sadly I've not reached that chapter in my How To Be A Magical Fairy book :( :( :( So the only person who can do this at the moment is a consultant or specialist, such as the Rheumy you will be seeing shortly, altho your GP already seems to suspect FM based on your history, tests results etc.

Having to play The Waiting Game while you're in LimboLand is a pain in the :girl_moon: :girl_moon: :girl_moon: Maybe you could use the time to help prepare yourself for the appt. Altho some details will have been incl with your referral, quite often the Rheumy will want to hear about how things are for you directly from yourself. So you could use the next couple of weeks to work on a bit of a timeline of things, or put together details of symptoms, how they affect you, for how long etc as well as note down any questions that you want answering.

Please do be careful when taking higher dosage supplements because having levels that are too high in your body can cause additional problems that can prove particularly unpleasant. I can understand your reluctance at not wanting to stop taking the supplements with how they have made you feel, but it is really the only way you can tell if they are what is making you feel like you currently do. Conditions such as FM tend to have periods where things will flare~up, often in varying degrees of intensity, and there could be a possibility that what you are taking may have some sort of masking effect when something does flare. Not taking them for the 3 month period your GP suggested would help give a clearer idea of what is happening and also to the actual degree that it can affect you.

Wrt travelling to New Zealand in September, the likelihood of it happening could come down to what the Rheumy says to you during your appt. If they feel additional tests etc might be helpful, or a second appt, or that there may be additional treatments/therapies that might be of benefit to you, you may need to make a change to things. This doesn't mean that it won't or shouldn't happen, but that some flexibility is needed, possibly along with a little more planning than usual for you to get there.

I think I've waffled on at you for long enough now. Have a bit of a looky around the boards as they are packed with all sorts of info and advice, some of which might be useful to you. Anything else that you want to know about, just ask and we'll try and help you with it :cow-wave: :cow-wave: :cow-wave:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: Fibromyalgia or vitamin deficiencies?

Postby carolad » Sun Jul 27, 2014 12:54 am

Like you, I've wondered whether some of my problems could be related to a vitamin deficiency. Certainly if you look at the symptoms of Vitamin D and B12 deficiencies, they are the same as fibro symptoms.

I've been reading up about it and it seems the RDA for both these vitamins is too low and that we need much higher levels to be healthy. So I've started taking high strength Vitamin D and B12 supplements. I've only just started on them so it's too soon to tell if they are going to help. Definitely worth a try though!
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Re: Fibromyalgia or vitamin deficiencies?

Postby snowwhyte » Sun Jul 27, 2014 9:15 am

yeah i was willing to try anything that might help. I'm taking a regular multivitamin, magnesium and high strength vitamin D and B12 and it did seem to help me. I wondered if my digestive issues were preventing me from absorbing vitamins properly so i started on an allergy elimination diet to test for food intolerances. I'm eating healthy, drinking plenty of water and once i finish the diet i intend to start a probiotic to help improve my digestion. i also want to start yoga or tai chi. i'm not sure if there's anything else i could be trying.
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Re: Fibromyalgia or vitamin deficiencies?

Postby carolad » Tue Jul 29, 2014 12:10 pm

snowwhyte wrote:yeah i was willing to try anything that might help. I'm taking a regular multivitamin, magnesium and high strength vitamin D and B12 and it did seem to help me. I wondered if my digestive issues were preventing me from absorbing vitamins properly so i started on an allergy elimination diet to test for food intolerances. I'm eating healthy, drinking plenty of water and once i finish the diet i intend to start a probiotic to help improve my digestion. i also want to start yoga or tai chi. i'm not sure if there's anything else i could be trying.


Definitely worth experimenting with your diet :) I found out last year I have a gluten intolerance - it brings me out in a rash around my mouth. But it may be that this is just the visible sign...it may have other effects as well (gluten intolerance can lead to the same symptoms as fibro). And apparently, if your gut is damaged by gluten, it can take up to 2 years for the body to repair itself! So I'm hoping that longer term, following a gluten free diet might make me feel better. In the meantime, I'm taking all the supplements I can get my hands on!

It sounds like you are doing all the right things - following a low inflammation diet, doing gentle exercise and learning how to relax properly will definitely help you manage your symptoms. I think we need to do everything we can to help ourselves since conventional medicine really has very little to offer in this case. I hope it helps you :)
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Re: Fibromyalgia or vitamin deficiencies?

Postby Zia2014 » Wed Jul 30, 2014 1:31 pm

Hi, I was also severely Vit D deficient and tbh was hoping it was all down to that, as it could be easily fixed! However I asked (demanded!) a re-test after being on 12,000 for a month, and it came back as the highest level of normal. So my symptoms unfortunately were not due to that. However it seems a lot of things are tied in together with these symptoms.

Good luck.
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Re: Fibromyalgia or vitamin deficiencies?

Postby snowwhyte » Tue Aug 12, 2014 7:38 pm

Well i just had my rheumatology appointment and my rheumatologist has diagnosed me with fibromyalgia. He listened to my symptoms and examined me and said he didn't feel any more tests were necessary since i'd had a load of blood tests, he was pretty sure it was fibro. He did say that if my neurological symptoms returned i should consider seeing a neurologist. He said to get a prescription for amitiyptyline from my GP and to have a nice time in New Zealand! I finally have a diagnosis so i think it was a pretty successful appointment.
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