Have I Been Misdiagnosed With Fibromyalgia

by Caroline

After 4yrs of pain in muscles/joints I was diagnosed last yr with Fibromyalgia. I was sent to Physio for cognitive therapy, which I found useless! Roughly 2yr ago I was diagnosed with Anemia and Vit D Deficiency, was given tablets for vitamin D and injections then tablets for Anemia.

Anemia was that bad that my hair was falling out in clumps. In between all this I have been in chronic pain now for the 4yrs, and over this time have developed many more symptoms, the main ones being, pain in muscles/joints all over body, in the beginning, insomnia, but now chronic fatigue, I don't wake refreshed, am sleeping till god knows what time in the afternoon, have not socialised with friends now for 4yrs due to fatigue, and feel like am just about holding my job down as all my energy goes into getting and performing my work.

I now get pins and needles in feet and hands, indigestion out of the blue, for no apparent reason, lack of concentration, light headedness/dizzyness, I get extremely hot to the point where sweat is pouring off me from waist upwards, and find it very hard to cool down. Also over this period of time I used to get headaches occasionally, now though, I get them often and they are mainly now migraines.

Recently I have noticed that I keep dropping things for no reason, and more importantly, when I feel that I have a grip on the object/item, so then when it is dropped,
I find it very hard to understand how it has happened. Please could you advise me if all of these symptoms can come from vitamin d deficiency or could it be something else that has been missed, I do feel that over all these yrs of trying to get to the bottom of it that I have not been listened to properly, and not been looked at as a whole picture, but rather just been assessed on the pain I have.

I am due to return to the doctors next wk, and this is a new surgery I have recently registered with. i have to go because I asked them to do blood tests again and now my vitamin d is low, at 30 I think the doc said, so I discussed on the phone that I wanted to see the doc to discuss all my symptoms, and start a process of elimination as to what may be causing them.

But in the meantime, if I can find out any info relating to my symptoms, then maybe I can get one of the doctors at my new surgery to listen to me and then I can start to feel better and recover from whatever is going on with my body. So anything that you can advise me on will be very helpful, as I now feel that I am just going round in circles and am being fobbed off as its all in my head!. Which I know it is not.

Many Thanks

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I wish that it were just vitamin d deficiency
by: Kerri Knox, RN- The Immune Queen!

Hi Caroline,

I wish that I could tell you that it's just vitamin d deficiency, but it's not. It's going to be MUCH more complex than that and, unfortunately, relying on your doctor for any answers is going to be futile because your problems are almost certainly severe nutrient deficiencies, adrenal exhaustion and food sensitivities and your doctor is not going to look for any of these.

So, first of all, please read my page on Fibromyalgia Cause and then read EVERY page that that page refers to, namely the pages on:

Gluten Sensitivity

Fibromyalgia and Magnesium

and all of the others.

Your doctor is NOT going to look for any of this, which is why they tell you that Fibromyalgia is incurable. It's not, it's just that docs don't do nutritional problems, so then they call tell you it's all in your head and ignore you when you continue to call. So, good luck at your new doctor's office.

In any case, if you want to start getting better, you need to stop eating foods that are hurting your and start getting nourished. To do this, I recommend that you get and follow EXACTLY the instructions in The Healthy Urban Kitchen eating program.

This is THE diet that will get you off of the bad foods that are hurting you and will get you nourished again. It is exactly how my husband and I eat every day to stay healthy and to stay nourished. The paleolithic diet is how our ancestors ate for thousands of years- and we still should be. You might be VERY surprised at how your health improves...

Kerri Knox RN Immune Health Queen

Kerri Knox, RN- The Immune System Queen
Functional Medicine Practitioner
Immune System
Side Effects

Same problems
by: Ashley

Hi caroline I was reading your story and I've been going through the same thing for the past year and a half. And I understand about the fatigue it's horrible and you feel like a hypercondriact. I also been having severe pain in my neck/ shoulder blade and arm on my right side. I always get pins and needles in my hands and feet.

I'm ALWAYS dropping and walking into things all the time. I also have a thyroid problem that I've had since I was two weeks old. I actually have no thyroid at all, and I've been goinback and forth to the doctors and they said I could have possible fibromyalgia better never diaginosed itnas that because "it takes years to diaginose" witch to me I think is b.s.

But.. And the more I've been doing research on fibromyalgia the more and more I think that's what my problem is. I had a vitamin d problem and they fixed that because they said that's why ive felt tired and exhausted and after stopping the vitamin d, I felt like crap again. I've been taking b vitamins to help with energy but they really do nothing. I feel like I'm in a war with myself. I've given up on the doctors they seem ton have no idea.

And if they mention fibromyalgia they tell me I'm too young for it. And they can never tell me why I have bumps in my mouth. They are not cankers they are like bumps near the top row of my teeth all the way in e back like near the back of the teeth, I've changed toothpastes , used salt and warm water and they won't go away vie had that for a year and half also. If anyone has anything on this please let me and Caroline know.

Thank you,

We have the same symptoms
by: Anne

Hello, You and I have identical symptoms, my first issue after being in pain for three years was the Vitamin D Deficiency, that is all now sorted and I expected to feel well again but sadly I have actually deteriorated - every single symptom that you described is how it is for me. I saw a Rheumatologist and was diagnosed with fibromyalgia but have yet to get medication sorted for it, I have just started on a low dose of amitriptyline because I am weaning off of another antidepressant.

I have started to drop things, dropped my camera yesterday down the cellar steps and that is now broken, I am not sure for how long I can afford to keep on dropping things - I have pins and needles in my arms and hand although only very mild pins and needles.

I have been taking magnesium, vit B's, coenzyme Q10, 5HTP, multivitamin - my diet is a very good diet and there is no improvement to be made to that.

I have been tested for rheumatoid arthritis and all of the other auto immune illnesses, my symptoms actually suggest hypothyroid but blood tests suggest that the thyroid is ok. So fibromyalgia was diagnosed. From much reading I am not sure what else it could be.

I am seeing a cardiologist next month so I will see what that raises.

So I am sorry that I have nothing to add or suggest but I just couldn't bypass a reply because everything that you have described just feels so unfairly familiar.

Take care.

You probably are hypothyroid
by: Kerri Knox, RN- The Immune Queen!

Hi Anne,

A couple of things that you said make me pause and I wanted to comment. First of all, you said, "my diet is a very good diet and there is no improvement to be made to that." While that MAY be true, if you haven't:

* Done a 100% Gluten Free Diet for at LEAST 3 to 6 months

* Eliminated corn, soy, dairy and almost all grains

* Eliminated ALL artificial anything particularly artificial sweeteners

* Eliminated ALL processed foods

* Eliminated 100% of all GMO foods

* Changed all your animal and dairy to completely organic and pasture-raised animals that are not given feed of any kind

* Stopped using Vegetable Cooking Oil

* Follow the eating principles of Weston A. Price

then there is likely a TON of things that you can do to improve your diet. I have yet to find a single client of mine who is eating really well when they told me that they were eating 'perfect'. So, I suspect that there is a LOT that you can improve in your diet if you are willing to be open to it- and it could make a HUGE difference in your health.

Next, you said that you've 'taken B vitamins', but did you take HIGH DOSE Methylcobalamin B12 and stayed on it for several MONTHS at a time? Your symptoms sound VERY much like Mental Changes from B12 Deficiency.

Also, if you 'think' that you have symptoms of hypothyroid, you are probably right! Lab testing for hypothyroid is entirely inaccurate. I encourage you to read the book Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal. Then find a doctor who is willing to go deeper into your potential thyroid issues. Nearly 100% of people with 'Fibromyalgia' have some degree of undiagnosed thyroid issues.

Kerri Knox RN

Kerri Knox, RN- The Immune System Queen
Functional Medicine Practitioner
Immune System
Side Effects

Oh I know how you feel! Misdiagnosed as well with Fibro
by: Jeremy

While Fibro IS a real disease, 99% of the time the term Fibromyalgia is loosely thrown around by a doctor who has given up and decided to just label you to get you out of his office.

While trying to find the answer for my rare disease I went to a Muscular Dystrophy Doctor aka the MDA aka Jerry's kids and found a doctor that specializes in rare diseases. When I mentioned the word FIBROMYALGIA the next sentence out of his mouth was

" NOPE I've seen thousands of cases of rare diseases and I have only ever given that label to 2 of the cases I have seen and I have been in practice for 30 years. They tend to tell you that when they give up on you. We will found out what is wrong with you."

And guess what THEY DID after 15 other doctors gave up on me over the course of 5 years while I NEEDLESS SUFFERED!

I have taken 2 others to see the MDA doctors who have been labeled with FIBRO and both times the MDA doctors found out the REAL cause of the problem.

I suffer from Polymyositis which *IS* an auto immune disease.

If I would have just accepted the diagnoses of Fibromyalgia like a good obedient slave I would STILL be in tons of pain for NO REASON!

Polymyositis is manageable and if I did not get it properly diagnose I would be suffering to this day for no good reason with a BS diagnose!

I have your exact symptoms
by: Lisa

No one helps me. The pain is unbearable. I would rather die than live like this. It has even affected my eyes. The problem is I do not look sick, and I can take a lot of pain. I sometimes wish I had cancer, so at least I would have a diagnosis. On top of it now, my dog is paraylzed and I have to take care of her too. They did genetic testing on medication for pain meds that would work on me and I have tried everything, so now I know why nothing works for me. The only medication that helps me live some kind of life will be taken away from me soon, the medication is Actiq and it is only FDA approved for cancer breakthrough pain. I just want to die.

OMG I'm the same
by: Fibromyalgia

I'm 22 and was told I have fibromyalgia my iron was at 2 and very low vitamin d but on top of all of the same stuff you comment about last year I was told my body put it's self in menopause due to the birth control shot. I have seen more and more that I just can't hold on to stuff and I've had it happen as I'm driving. I found all this out back in February after I walked in to school and passEd out from a bad headache did a brain Mri and was told they saw many white spots on my brain but still no answer other then fibromyalgia.

I'm still in the denial phase. ...
by: lila

Well dear, seems you are describing my status. I have been diagnosed in 2003 after 10 years of unknown pain. Since that time, I'm still refusing to accept it and trying all sorts of therapy and medications.

I do have severe deficiency in vit D but all other tests are normal. I got sick quickly frequently and it takes ages to cure from a mild cold or flu. Even 10 minutes exercise will consume my entire energy. Sometimes i think I'm just depressed and it's in my head but sometimes in the middle of happy time, i get stuck in my bed and can't move. Every small change in the weather kills me.

Cant handle the cold neither the heat. I have asthma, urticaria, severe food intolerance and allergy. I have high level of ANA *ANTI NUCLEAR ANTIBODIES* and I'm still in the denial phase that it's not a fibromyalgia. I am also loosing my memory gradually. Cant focus even on easy game. And I'm still in the denial phase hoping that one day, one pill can cure it all.

best wishes for all of you.

very concerning
by: Anonymous

A lot of what is described here sounds like MS, and needs to see a Neurologist. Has anyone here been to one? The doctors everyone is going to are not going to link this together. I had to demand to see one when my primary care doctors response was "we may never know what you have" which was not good enough for me. I was thankful to have a Dx instead of never knowing what it was to the point thinking that I was going crazy.

I have MS, drop things related to the muscle weakness, chronic fatigue, heat intolerance and constant pain, numbness, tingling, spots that burn for no reason and the list goes on.

I also have very low Vit D levels around 12-17.

Lichen planu
by: Anonymous

Lichen Planus is likely the cause of the sores in your mouth . It’s thought to be autoimmune, but could be related to fms. A biopsy (dermatology or dentist) can confirm .

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