Advice, other conditions. : It seems I... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Advice, other conditions.

Kazhc profile image

It seems I have everything wrong with me at the moment but I’m trying to make a connection and at this point Fibro is used by my healcare team as an excuse not to look into anything else. After a bit of research I think I may have mysitosis, which is an autoimmune condition, but a friend thought I may have hashimotos (I’ve no idea if that’s spelt right)! Does anyone have any insight into other conditions that are associated with Fibro? I do have hyper mobility/ehlers danlos (it depends which doctor I speak to as to what they call it, but I seem to have so many issues that I’m sure they must all connect, it’s rediculous that I have to figure this out on my own but I have to so I can get the right care!

16 Replies

Hi yes I seem to b in same situation as u I have pain so bad all the time and feel there is something more than fibro causing it but it seems once fibro is diagnosed there is nothing more doctors will do or say they can do take care

It would be a good idea to rule our Hashimotos - something the medics prefer to call Auto-immune Thyroiditis ! It is difficult to get it tested - but these are the tests you need - TSH - FT4 - FT3 and the Thyroid anti-bodies TPO & Tg. I was diagnosed with Fibro in 2000 and Hashimotos in 2005 - after moving to Crete - when the correct Thyroid tests were done routinely.

Sadly the NHS seem to think testing just the TSH is adequate - sadly not. It is only part of the story. it is a Pituitary hormone. If you are in a position to have Private Testing through Thyroid UK I can give you the links. Home Testing Kits sent out to your home and results by e-mail - with Medichecks and Blue Horizon. It is the only way to have the correct testing done.

With Hashimotos absorption can be impaired - and so B12 - Folate - Ferritin - VitD are often low in range when being higher can make a huge difference to your health and how you feel.

Many symptoms of Fibro overlap with low thyroid - also low vitamins and minerals can cause widespread pain. Hashimotos can affect the gut and with all the information out there now - it is clear to see that having gut issues like inflammation - can spread to other parts of the body.

Happy to help ...

Kazhc profile image
Kazhc in reply to Marz

YES! I don’t absorb folate or iron! I have just had to have an iron infusion after being deficient in both for two years! And I am currently under a consultant for my digestion, I don’t digest food properly through my stomach and my intestines and colon don’t work properly to remove waste either meaning that for the most part I rarely eat because the pain and bloating is excruciating! These are some of the things I mean when I say Fibro isn’t a condition that is responsible for everything! Now I’m getting somewhere!!

Marz profile image
Marz in reply to Kazhc

Maybe you have low stomach acid - which can accompany other conditions like Hashimotos when the metabolism slows. Have you tried a teaspoon of Apple Cider Vinegar in warm water to help the digestion by improving stomach acidity ...

I am not a medic - just someone who has Hashimotos - Crohns and a B12 issue due to surgery ...

Jennyw59 profile image
Jennyw59 in reply to Marz

Hi Marz

Very interesting. I was tested TPO positive and tsh raised slightly last year then normalised & T4 within low but normal range. Doc dismissed it & didnt put in T4 supplement. Now my TSH slighly raised in the 6's & T4 just dipped under normal and I have had stomatitis and feeling so exhausted have had to go off sick. I'm wondering if this worsening of flare up is linked and wether low dose thyroid might help or not. Gp left a message to make routine appt to discuss but next appt is 23rd & tbh I can't wait that long as can hardly get out of bed! Interesting about the cider vinegar I will give it a go!

Marz profile image
Marz in reply to Jennyw59

A TSH over 2.5 can indicate Hypo and your raised anti-bodies confirm Hashimotos. Your thyroid is not producing enough of the thyroid hormone T4 - which is a storage hormone - and needs to convert into the active hormone T3. Rarely tested in the NHS and yet every cell in the body has a receptor for T3 - so important to have good levels for the body to function well.

Having Hashimotos can affect digestion and the absorption of vitals - so good to test B12 - Folate - Ferritin - VitD as levels need to be optimal for thyroid hormones to work well - both your own and any taken.

Hashimotos is auto-immune and can cause your test results to fluctuate. I have been a member of Thyroid UK for seven years - so worth popping over there on HU to post and learn more if you feel it appropriate.

I have Hashimotos along with other health issues - so feel free to click onto my username and read more on my Bio. I am not a medic 😊

Happy to help ...

Jennyw59 profile image
Jennyw59 in reply to Marz

Thank you Marz - very helpful and I will have a look at your site. Although I am a nurse it's still a complicated subject! I've read a lot of people state even low to normal levels of thyroid hormone make their fybro a bit better when treated. Many thanks jenny

Marz profile image
Marz in reply to Jennyw59

Am sure you are right. I was diagnosed with Fibro by a Consultant in 2000 and with Hashimotos in 2005. I was diagnosed on retiring to Crete where FULL testing was done from the off - including a scan. Hashi thyroids look grainy ...

Currently supporting my eldest struggling with GP's that are following Guidelines. My youngest had her Greek results ignored by her UK GP and eventually she saw an Endo privately who did a FNA which revealed Thyroid Cancer. Her GP tested her three times and declared her normal and was reluctant to refer her on. Her thyroid was removed and RAI followed. She went on to have cancer in her leg and has had two surgeries. Of course the experts say there is no connection. She has regular body scans and holds down an amazing job in Sales/Training with a major cosmetic company.

This all helps to drive me on to ensure EVERYONE gets the correct diagnosis and the treatment they so deserve ...

Jennyw59 profile image
Jennyw59 in reply to Marz

Thank you so much you have been very helpful. I'll bring it up with GP and see if I can get a referral to an endocrinologist. I hope everything is now ok with your daughter. Kind regards Jenny x

Marz profile image
Marz in reply to Jennyw59

Most Endos specialise in Diabetes and have little or no clue about thyroid. There over 88,000 members on the Thyroid UK Forum where you will soon get the feel 😊

On the website for Thyroid UK you can read about obtaining a list of Thyroid friendly Docs. The best thing you can do is have all the correct testing done privately and then post results with ranges on the Thyroid Forum for the best way forward ...

thyroiduk.org

Jennyw59 profile image
Jennyw59 in reply to Marz

I've got all tests done ( as I work nhs!) Just GP dismissed it as 'not that significant' ! Don.t know enough yet to challenge his judgment but will look your thyroid site to gain more insight x thanks

Dercums disease is commonly diagnosed as fibromyalgia then later realised its dercums because you get the confusion the spasms, the days where nerve pain is up high,then swolleness and inflamed areas and so on.dercums is lumps around different areas of body that doctors commonly think its just fatty tissue there's no pain cause no nerves veins run through that get squashed sometimes leaving people paralyzed but there is ,intact fibromyalgia, dercums disease and arthritis is in top ten most painful deseases in the world lucky me has the three.so do you think you've been miss diagnosed?

It is difficult to diagnose our selves . we can document and keep tabs ..there are a lot of auto tune system diagnoses too. process of elimination-is key .one can mask the other or two or three things can be happening.try not to obsess over this as you go on with daily activities.it is a hard place to be i know i was there. I'm still being diagnosed after almost 30 years

Jennyw59 profile image
Jennyw59 in reply to jessiegirl

Sadly your right. One day there may be a diagnoses for all these simmilar auto immune disorders, and hopefully some better therapy. It's very frustrating when there seems to be no cure and obviously people worry wether there's some 'underlying' condition that can be treated. In the end it's accepting there is no cure and the best we can do is do what we can well!

Hi Kazhc

Fibro,me,cfs,eds, call it what you will they all have similar effects and i'm sure theres some common underlying cause there but one which they havent found yet. Call it what you like - at the end of the day it's matterless as theres no majic cure which is the frustrating part! Big hugs x 😘 hope the cider vinegar helps

There are lots of conditions under the same umbrella, coming from probably the same root cause or combined causes. The GP's at NHS don't really seen to have much training or knowledge in this field. I am doing my own research, for about 18 months after a gradual onset of symptoms over 4 years. So far the study and the information is colossal, and understanding all of it has taken a good long while. I speak to others on forums like this, I speak to private consultants over the phone and naturopaths, herbalists, talk about complimentary treatments, acupuncture, herbs, oils, hypnosis, counselling etc. Eastern medicine makes much more sense to me now compared to the western world. The Chinese way of finding root causes the way they have for thousands of years, is completely sensible, and their treatments actually re-set you, rather than just blocking pain.

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