Aa
Do i have Fibromyalgia??!!
Hi, i cant get any answers from my doctor about the problems i am having and it is so frustrating! Am wondering if i may have fibro? I am a 20 yr old female with syringomyelia (spinal cyst) and scoliosis. Here is a list of my symptoms:
Pain in legs-Has been ongoing since a young age. Worse in cold weather
burning in shoulders
headaches and neck aches.
pains in my back either side of spine.
intercystital cystitis.
painful periods.
heart palpations
dizzy episodes with nausea and blurred vision.
sleep problems,always wake up tired.
fatigue
teeth grinding
anxiety/low mood
Could this be fibro or does anyone know what it could be?Would be greatful for any advice!
Pain in legs-Has been ongoing since a young age. Worse in cold weather
burning in shoulders
headaches and neck aches.
pains in my back either side of spine.
intercystital cystitis.
painful periods.
heart palpations
dizzy episodes with nausea and blurred vision.
sleep problems,always wake up tired.
fatigue
teeth grinding
anxiety/low mood
Could this be fibro or does anyone know what it could be?Would be greatful for any advice!
You do not need a dr referral unless you have an HMO. But you need a rheumatologist who also treats fibromyalgia. A rheumatologist who doesn't treat fybro will not be receptive to you.
Thyroid is "within normal range" but that can be very broad. I have hypothyroid and my "sweet spot" range is around 1.00, not 3.6, where I feel horrible, tons of pain, parasthesias, hair loss, stomach problems, and all sorts of other stuff. I found a really good website by Mary Shomon on About.com. Very informative. If your doctor is not receptive to testing out thyroid meds, check with an endocrinologist.
Since you have had these symptoms since you were 9, that may be more like MS, or lupus? have you had those checked out?
Since you have had these symptoms since you were 9, that may be more like MS, or lupus? have you had those checked out?
Oh really? that's interesting, no i did not, I only had a standard MRI. I didnt even know about cine MRI's, i just looked that up! My doctors never mentioned anything about one of those. Perhaps I should mention it to them. Thanks for all this info! Was really feeling like i had run out of options so thanks a lot.
I've read far too many comments on the Chiari Malformation forum of those suffering with Chiari symptoms under 5mm. Did you have a cine MRI done? I randomly found a comment of someone who underwent decompression surgery with a 4mm herniation. Her cine MRI showed almost complete CSF flow blocked....
http://www.medhelp.org/posts/Chiari-Malformation/4-5mm-symptoms/show/1270893
http://www.medhelp.org/posts/Chiari-Malformation/4-5mm-symptoms/show/1270893
Yeah ill defiantly look into magnesium deficiency. Yes i do get a lot of cyst pain. I do get burning in my shoulders/neck and pain in my hips which i always thought was just from my spinal issues but according to my neurosurgeon is not related! I was checked for chiari because of my headaches/neckaches. But I only have a herniation of 3 mm or 4mm or something like that so they said i dont have it and that couldn't be causing my symptoms. Which was frustrating to hear. Hopefully i will get to the bottom of it all though. Thanks for the information!
I'm not exactly sure how long i've had magnesium deficiency but at the very least 12 years ago based on a few symptoms i had. About 6 years ago the heart rhythm problems started. 1 year ago i corrected my deficiency thankfully. I do have a knee jerk reaction to mention magnesium deficiency when i see intercystital cystitis lol.
Some of your symptoms are listed under syringomyelia such as the leg pain and back pain. In most cases syringomyelia is related to Chiari 1 malformation. The second major form of syringomyelia occurs as a complication of trauma, meningitis, haemorrhage, tumour, or arachnoiditis.
There is quite a good list of symptoms on the Chiari One website - symptoms list. The list includes quite a few of your symptoms including burning shoulders. A standard MRI - sagittal (side) view is used to help identify Chiari 1. A cine (stands for cinema) MRI helps to determine the amount of cerebrospinal fluid (CSF) flow. A cine MRI can be useful in cases of borderline/Chiari 0 malformations or if decompression is needed.
Excerpts from Chiari Australia - frequently asked questions:
"2. Does size matter?
-The definition of chiari used by most doctors is that the tonsils need to be herniated at least 5mm to be classified as chiari. There is no correlation between the length of herniation and symptoms or prognosis. However there has been new research which focuses on the Chiari 0 where there is no herniation as seen in classic Chiari, but that the tonsils block the CSF flow as much as Chiari 1 causing the same issue.
4. What is borderline or type 0 Chiari?
- Borderline Chiari is not always recognised by all doctors. It is where the cerebellar tonsils are not herniated but crowd the Foramen Magnum stopping CSF flow like in Chiari 1 malformation. This can cause the symptoms seen in Chiari 1 and can be treated the same way. It is also called Chiari 0 by some."
Some of your symptoms are listed under syringomyelia such as the leg pain and back pain. In most cases syringomyelia is related to Chiari 1 malformation. The second major form of syringomyelia occurs as a complication of trauma, meningitis, haemorrhage, tumour, or arachnoiditis.
There is quite a good list of symptoms on the Chiari One website - symptoms list. The list includes quite a few of your symptoms including burning shoulders. A standard MRI - sagittal (side) view is used to help identify Chiari 1. A cine (stands for cinema) MRI helps to determine the amount of cerebrospinal fluid (CSF) flow. A cine MRI can be useful in cases of borderline/Chiari 0 malformations or if decompression is needed.
Excerpts from Chiari Australia - frequently asked questions:
"2. Does size matter?
-The definition of chiari used by most doctors is that the tonsils need to be herniated at least 5mm to be classified as chiari. There is no correlation between the length of herniation and symptoms or prognosis. However there has been new research which focuses on the Chiari 0 where there is no herniation as seen in classic Chiari, but that the tonsils block the CSF flow as much as Chiari 1 causing the same issue.
4. What is borderline or type 0 Chiari?
- Borderline Chiari is not always recognised by all doctors. It is where the cerebellar tonsils are not herniated but crowd the Foramen Magnum stopping CSF flow like in Chiari 1 malformation. This can cause the symptoms seen in Chiari 1 and can be treated the same way. It is also called Chiari 0 by some."
Hi Kate.
I'm not sure in NZ but here in Canada to see a "Rheumie" as
we call them sometimes, it is recommended you get a referral through your family doctor. There are always exceptions where people have gone directly, but the rheumie must have access to their medical file.
A couple things you may want to try on your own, to rule out
magnesium deficiency which is a good possibility as Red Star
mentioned and gluten intolerance.
1. Do daily Transdermal Magnesium Oil treatments. Non-invasive, safe
and your body will love it! Look it up - let me know if you need details.
It will help regulate your heart rhythm over time if indeed Mg deficient.
The beta blocker was prescribed for this (elevated heart rate)?
Look into the long term effects and do verify with your prescribing doctor the benefit /risk analysis,
as if it relates to a Mg deficiency then why continue taking a beta blocker.
Magnesium deficiency can be detected by a tissue analysis for minerals.
The trivial valve leak is normal,I believe, so no cause for concern.
2.Consider going on a very low carb diet (no grains, no sugars)
for 2 weeks, if better, go on a gluten free diet.for the following 2 weeks.
If not better, then, discontinue as there's no benefit.
If not better on the gluten free diet, then there's possibility of Candida
overgrowth or other issue with general carb intake.
The last step would be, to see the Rheumie for further exploration.
Oh, just thought about this. Look into Hypothyroidism type 2,
as many of your symptoms match. It is a type where your Thyroid Hormones levels test normal.
Check all this out and post again or pm me personally.
Take care.
Niko
I'm not sure in NZ but here in Canada to see a "Rheumie" as
we call them sometimes, it is recommended you get a referral through your family doctor. There are always exceptions where people have gone directly, but the rheumie must have access to their medical file.
A couple things you may want to try on your own, to rule out
magnesium deficiency which is a good possibility as Red Star
mentioned and gluten intolerance.
1. Do daily Transdermal Magnesium Oil treatments. Non-invasive, safe
and your body will love it! Look it up - let me know if you need details.
It will help regulate your heart rhythm over time if indeed Mg deficient.
The beta blocker was prescribed for this (elevated heart rate)?
Look into the long term effects and do verify with your prescribing doctor the benefit /risk analysis,
as if it relates to a Mg deficiency then why continue taking a beta blocker.
Magnesium deficiency can be detected by a tissue analysis for minerals.
The trivial valve leak is normal,I believe, so no cause for concern.
2.Consider going on a very low carb diet (no grains, no sugars)
for 2 weeks, if better, go on a gluten free diet.for the following 2 weeks.
If not better, then, discontinue as there's no benefit.
If not better on the gluten free diet, then there's possibility of Candida
overgrowth or other issue with general carb intake.
The last step would be, to see the Rheumie for further exploration.
Oh, just thought about this. Look into Hypothyroidism type 2,
as many of your symptoms match. It is a type where your Thyroid Hormones levels test normal.
Check all this out and post again or pm me personally.
Take care.
Niko
Thanks for your reply, I hadn't considered a magnesium deficiency. I will look into that. 'Im not sure if i have had tests for mineral deficiency etc I've had so many over the years I loose track! Will ask my doctor about that. How long did you have your deficiency for before it was diagnosed? I have had most of my symptoms from quite a young.
Thanks for your response! yes have had blood work done and that all came back fine.Have had glucose and thyroid and they also came back normal. Have not had a tissue analysis though. Have have an echo,heart monitor etc and they didnt show much.Just that i have an elavated heart rate and trivial heart leak which they have given me a beta blocker for. I have a good diet,eat as healthy as i can and excerise etc. The doctors have just given up on me really which is frustrating because its affecting my work etc. A lot of these symptoms iv'e had since I was about 9 so really want to get this sorted!
I thought i had intercystital cystitis for 2 years. I saw a 50% improved in bladder pain in just one week of magnesium supplementation! Most of your symptoms are in fact listed under magnesium deficiency but this is just one possibility. I had over 50 symptoms myself with severe magnesium deficiency. My doctor didn't have a clue. Yet another condition i diagnosed with help from Dr Google. :)
Hi Kate!
Have you seen a specialist like a Rheumatologist?
Have you been tested for nutritional deficiencies -blood work and tissue analysis for minerals?
Also have you been tested for gluten intolerance, food allergies etc.
How about Thyroid tests?
Let me know about any tests and findings, medications, lifestyle,
diet, etc.
I'll get back to you after you reply.
Hang in there, there always things you can do.
We're all here to help and support one another.
Cheers!
Niko
Have you seen a specialist like a Rheumatologist?
Have you been tested for nutritional deficiencies -blood work and tissue analysis for minerals?
Also have you been tested for gluten intolerance, food allergies etc.
How about Thyroid tests?
Let me know about any tests and findings, medications, lifestyle,
diet, etc.
I'll get back to you after you reply.
Hang in there, there always things you can do.
We're all here to help and support one another.
Cheers!
Niko
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