THIS IS WHAT I have learned, found, and am curious about .

Bones, joints and muscles
1

I HAVE NO EVIDENCE THAT ANY OF THIS WORKS< NOR DO I SAY THAT I AM A DOCTOR, Just SHaring what I have gathered.

So far from my list of info.

I need to see an Endocrinologist and infectious disease doctor. I have already seen an neurologist, rheumatoid arthritis, urologist, and a primary.

I need the following test:

Elevated Blood Calcium

Bone disease

Muscle disease

Parathyroid disease

Adrenal Body Type Progression

ApA Biofilm bacteria

 Marshal pathogens

Assay (abnormal immune system response)

Sarcoidosis

I want my pituarity gland looked at and an MRI of my entire body.

My primary has ran a CBC and a Lime disease, and a thyroid test.

I partly think that I may be having some issues with the adrenal body type progression from what I have been noticing, but I am not a doctor.

The infectious disease doctor is to check me for any “black mold”, there has been evidence of this being in the sinus cavity. I also will be able to have mycotoxin tested.  It can occur at any age, personally I can’t tell you everywhere I went between 1-8 years of age. The whole better to be safe than sorry.

If I do have fibro, and it takes me forever to walk from the parking lot to the store’s front door, why can’t I get a handicap sticker? Why is it when I asked about it, the doctor swept under the mat?

 

Home remedies that others have shared, I am planning on trying ASAP

S-adenosylmethione(SAME)

Acupuncture (there is a place where they have a sliding fee, here locally)

Capsacian lotion

Magnesium

Epsom salt

LCarnitine

CoQ10

Tocotrienols

B12

VitaminD

Htp5

 I would like more information on having treatment with low dose of LDN(endorphins)  in treatment.

 

2

Can I add another (unfortunately non testable) condition? Complex regional pain syndrome, or CRPS. There's an article about it in today's Guardian. I can't post the link because they're not allowed but if you go to the Guardian site and search for chronic pain, it's the first answer.

 

3

Hi do you hope to achieve these investigations on the NHS through your GP?

4

I do apologize I am not sure what NH is abbreviation for. The GP is aware of the test and the dr refferrals that I have requested. He feels that most of the test would be beneficial if the thyroid physician is the run who runs them.

5

Hi ,

I just read about this syndrome as well.. I am not goinig to be satified with you must change your life do to pain that we can not pinpoint a cause for and give minute medications that one don't work or makes me so tired to be an active citizen.I understand that these things exsist but research shows that they have been in existence for a while and they are not approaching the cause or treatment as they should be for the 21st century.We need to remember if we don't fight for our selves then we are taking the idea that you are goining to hurt for ever. You will no longer be able to play tennis, or be intiment with your partner, or fly across the state for your child's graduation. I HURT , but it makes me MAD and it burns me when I think that I am the one doing the RESEARCH and I am paying for you are going to hurt and we don't know why .

I have been doing tons of research and found thAT DR. JOHN LOWE ( A THYROID PHYSICIAN)  has done research with FIBRO . So has Dr. David Derry . Look we have two options, sit and do what the dr. say and live a painful life with excuses to loved ones. Or we can fight by researching ourselves, communicating, learning, being pro active for the life we have. I for one refuse to tell my grandchildren that I can't play with them because I hurt (when I have them) .

6

Hi. NHS stands for National health Service. This is relevant in th UK.

It depends on your GP as to what tests they will do. Some will do more than others.

Like some are easier to talk to than others.

I hope you get all your tests and referrals and get the answer you want.

Take care and gentle hugs

7

Very unlikely nhs would do all those tests. 6yrs on I've had the usual Rheumy tests, the normal liver, kidney, elevated inflammatory markets and some electrolytes. I talked them into a lymes test and he checked serum potassium but don't think I would get anything else out of them if I begged.

They haven't done thyroid panel for about a year and id love some hormone testing as perimenapouae can cause a lot of fibro symptoms but they would say I'm to young so wouldn't entertain it.

8

Thank you for sharing this list. Good luck with it all, I hope you find some resolution. If you feel able to share any results it may help others In their quest. 😃

9

I try to keep the attitude of RESPECT with physicians but thy work for me. I had seen a urologist 3 times, knowing that I needed surgery , planned it according to taking online classes , and she never diagnosed me just medicinie after medicine with nothing changing. Well yesterday , I went to the new urologist who said, oh ......you will need surgery. They aren't perfect and they need our guidance as it is our bodies.

10

CNS  CRPS  all the same umbrella's...   They don't know how to diagnose the brain so well as to see what and where the pain is caused in area's of our body...YET  

I am going to have a google of your Guardian newspaper and see if I can read it..  Thank you.    

Even though it was said years ago I had CNS/CRPS after head trauma in my car accident (it was a bad one)...  I never ever got any treatment...  then or after.  Our system sucks here...