Is there a link between fibromalgia a... - Fibromyalgia Acti...

Fibromyalgia Action UK

59,346 members66,394 posts

Is there a link between fibromalgia and underactive thyroid ??

Angeren14 profile image
12 Replies

Hi, first time on here.

Most of my adult life I have suffered from pain related illnesses ever since I had glandular fever at age 19. I am not the type of person to run to the doctor everytime I feel pain but when it goes on and on for months/ years with no let up you want some answers as to what is causing all this pain. I have suffered from headaches , nausea, IBS, stress / anxiety, feeling cold , cold hands and feet , low moods. In 2006 I had some bloods checked and they came back normal. My gp at the time said he wanted to run one more test it came back that I had a condition called Gilbert syndrome, he said it didnt require treatment and it wasnt life threatening. He said headaches were stress related and said they were tension headaches.

As time has gone on I have had more and more pain related problems pains in my neck,shoulders,back,hips,legs,numbness in my feet and hands, wrists, fingers very stiff in the mornings. I decided to wrote everything down and marked on a body chart areas of pain and described the types of pain i was experiencing to present to my gp, she said what I had presented to her looked very much like fibromyalgia, she ran some blood tests to rule out other conditions which might have simular symptoms, I had bloods checked for calcium, vitamin D,liver function, kidney function and thyroid all came back normal apart from vitamin D it was on low side but not low enough to be given medication she advised me to buy some vitamin d tablets. Pains continued to get worse i was prescribed tramadol, didnt help, I have been prescribed setroline, flueoxitine nephopam, amitriptiline and many more. I am going through menopause and at one time my gp said my symptoms could be caused by the menopause or by medication.

Eventually I was referred to pain clinic they put me on Gabapentin, etoricoxib, nortriptyline, and lidocaine plasters, the pain clinic reported to my gp that I was presenting muscle pain as well as neuropathic pain. I found a lump on my neck last week I consulted my gp she said it looked like a cyst on my thyroid gland she took bloods and arranged for an aultrsound scan, bloods came back normal and I had scan yesterday so just have to wait week or two for results, my tongue is swollen and scalloped, Ive gained weight, feet and hands cold, painful wrists , fingers very stiff in the mornings, feet feel tingly and sometimes numbness and I have high cholesterol. What I want to know is there a connection between all these conditions I have mentioned above.

Any info would be much appreciated

thanks

Written by
Angeren14 profile image
Angeren14
To view profiles and participate in discussions please or .
Read more about...
12 Replies
lou1065 profile image
lou1065

Hello, this question arises from time to time, I can only respond from my own experience. I was diagnosed with Fibromyalgia around 1998 or thereabouts having had the symptoms for many years prior to that. About three months ago I got a diagnosis of Hypothyroidism, I have asked my neurologist about a link and he said he believes the two are quite separate conditions. I would consult your health professionals to see what they think. I was also told that some of us with fibro do not absorb nutrients very well I have injections and vitamin D supplements to top up what I am lacking. I can only say that many conditions share symptoms and that it is quite a journey to reach diagnosis. Lou xx

Stephrm44 profile image
Stephrm44

Hi, I have previously seen suggestions that fibro and underactive thyroid could be linked. All I can say is that I was diagnosed with an underactive thyroid about 20 years ago and have also now developed fibro. Strangely enough I also had glandular fever in my late teens, wonder if there is a connection there? Hope you manage to get your meds sorted so they help with your symptoms, gentle hugs. Steph

reading your story is like one i could have written and changed some of the details...when i was younger i had scarlet fever 5 or 6 times, german measles a few time and chicken pox about 10 times. after i had my first child i noticed a lump on my neck and doctor said it was fatty tissue and has done nothing there and because it doesnt bother me i havent pushed it further.

i now have, sjogrens syndrome, fibromyalgia, under active thyroid, the start of arthritis in my hands. also depression.

so i take tabs for all them as well as eye drops and nasal spray. i have continuously for 8 or more years suffered from anemia so my doctor has put me yet again on iron tablets but also vitamin b12 tablets, i go back end of month for more blood to see if theres any change after 6 weeks taking both these new tablets. she is going to consult with a doctor at hospital my anemia and wants to do further tests,

i have put on loads of weight and some days have the brain of a fish. some days i cant move. some weeks i dont shower for a week unless i get assitance and some times never leave house for months at a time .

i wish you well and some relief...big hugs to you .x.x.x

TheAuthor profile image
TheAuthor

I am so genuinely sorry to read that you have suffered and struggled so much and I sincerely hope that you can find some resolution and relief to these issues. I had a conversation with my Consultant about my Fibro and all of my other illnesses and disabilities, and he says that there is no connection known between the two. He explained what all the illnesses were about and how they are completely separate.

I want to genuinely wish you all the best of luck.

All my hopes and dreams for you

Ken

Naturegirl profile image
Naturegirl

Hi - I am so sorry you are suffering so badly - my heart goes out to you. I have had fibro for over 30 years and also have an under active thyroid. My tests also came back normal, but there is a Dr Wilson in the USA who has developed a therapy for under active thyroid, which doesn't show in the normal tests. Take you temperature during the day a couple of times and if it is below normal it shows that you possibly do not convert T4 to active T3. He has developed a treatment which I did for 15 months, but I ran out of money and therefore my temperature is still below normal. What helps me now? I take low dose Lithium Orotate and low dose Naltrexone (LDN) - please google it all. It clears my brain fog a bit and makes me sleep better. I also take mega doses of vitamins. Read a lot about Vit B1 yesterday and I am going to try this as my final attempt to help myself.

Life with fibro sucks - no social life, no energy and the constant pain, but I am grateful that I can still work (desk work). I live in Namibia Africa and don't know a single person that has fibro in my town - so nobody understands what I go through.

Gentle hugs to you

Gisela

Mdaisy profile image
Mdaisy

Hello Angeren14,

This is a difficult question that does come up regularly but the answer is research continues...............

As the question is commonly asked we, FibroAction did write a post with current information, please see link below;

healthunlocked.com/fibroact...

Hope this helps

Emma :)

FibroAction Administrator

Betty67 profile image
Betty67

Again we all have our own path on how we got here but I have been diagnosed with under active thyroid fibro, had glandular fever more than once. Also have a leaky gut that I believe important.

calihotel profile image
calihotel in reply to Betty67

Hi. What do you mean leaky gut? I'm just about to go through tests including a colonoscopy. Didn't think it was fibro related so Im interested. Thanks

Betty67 profile image
Betty67 in reply to calihotel

Micro holes in the lining of my gut so that "things" enter the system before they are processed correctly. Suggest you look it up it is called leaky gut and there are tests.

calihotel profile image
calihotel

Thanks. I will look it up.

FFC1 profile image
FFC1

Hi

I am so sorry you are suffering this way. I have had an under active thyroid for 20+ years, I was then diagnosed with Fibro, I also have Raynauds, Sjorgens and PBC and enlarged spleen. I have anemia which is treated by large does of Iron on daily basis and vitamin D deficiency. I have been told by one consultant (Kings College Hosp) that all can related as all are/can be auto immune diseases and often when we get one more follow (such fun). I am lucky in that I can still work, although my social life is shot to pieces. But I do also have some unrelated ( I believe) problems with feet and knees.

I hope you get some answers, I have all but given up expecting any. Good luck and God bless

MariLiz profile image
MariLiz

Hi Angeren, have you ever had your B12 levels tested. You mention numbness as one of your symptoms, and this can be as a result of nerve damage caused by low B12. I have had underactive thyroid since 2005, and more recently been diagnosed with Low B12 and fibromyalgia. Unfortunately, so many of the symptoms are similar in all these conditions. I'm currently pursuing more investigations via an endocrinologist as I want to re-examine how my thyroid is being treated. Reading so many other stories on here, I think these illnesses are linked in some way. I'm not sure a doctor would agree though. Good luck with getting help and some answers. MariLiz

You may also like...

Symptoms of Fibromalgia

ache & stiffen as do my wrists. Severe neck, shoulder & back pain, headaches. Stiff arms & legs....

Fibromyalgia and underactive Thyroid

was wondering how many fibromyalgia sufferers also have thyroid issues especially underactive...

Weight Gain (Fibro and Underactive Thyroid)

I have Fibro and an underactive thyroid and am really struggling with weight gain. Is this common?...

Link between fibromyalgia and Positional cervical cord compression (PC3)

revealed I have serious issues of positional cervical cord compression and I am initially going to...

Could I have Fibromyalgia

tendonitis in back of the heel and painful heels. Waiting to see a rheumotologist..have had low...