Fibromyalgia Action UK
40,630 members52,706 posts

Could it have been FM all along?

***Any advice would be greatly appreciated please***

Hi everyone

I am a new user, I have come back time and time again to the possibility of FM, but kept just leaving it and not mentioning it to my doctors.

Something never feels 'quite right' with me. I'm 34 now but for many years I've suffered from different ailments, usually resulting in an 'oh I'll send you to physio', 'oh you're depressed', 'oh you have an inner ear infection' etc etc. Starting to think they'll diagnose me with hypochondria soon lol.

Over the years, I have suffered with / been diagnosed with (and all are still present):

• Depression (Diagnosed)

• Anxiety (Diagnosed)

• Numbness, tingling, weakness in my hands

• Dizzy spells, usually if lying on my back and with standing (told it was probably due to low blood pressure)

• Low blood pressure (Diagnosed)

• Back pain (MRI diagnosed a tear in my L5/S1 disc and degeneration in the lumbar spine)

• Neck pain (MRI diagnosed degeneration in my C spine)

• Shoulder blade (muscle) pain

• Sciatica (Diagnosed)

• Weakness and pain in my arms and legs. I've been gradually getting increasing pain and tenderness along my shin bones and my forearms in the last 6-12 months too

• Jaw pain

• Knee pain / weakness

• Fatigue

• Trouble sleeping

• Tired a lot

• Irritable Bowel Syndrome (Diagnosed)

• My eyesight is 'shadowy', not sure I'd say blurred but jumpy, never quite right, even with glasses

• Memory loss, struggle to remember what I did yesterday, but can recall numbers etc easily and long term memory seems ok.

• Struggle to concentrate at times.

Do you think it could be FM? It hasn't stopped me working, although I've been off sick a few times for 5/6 weeks each time, due to stress and anxiety, as everything becomes too much all at once.

From what I've seen it's not easy to diagnose and I'm worried I'll be laughed at, but had loads of blood tests over the years, tested for coeliac, immunodeficiency test etc etc and other than the MRI's on my back and neck, nothing concrete has ever come back. Felt for a long time that maybe I'm just overreacting or a complainer but wondering if it may be FM, as I try my best to do everything I can but it feels like there is always something wrong and I get fed up of the sound of my own voice sometimes 😢

Any help or advice would be greatly appreciated.

Thanks

Nat xxx

13 Replies
oldestnewest

Hi there. Have you ever had blood tests to check your Thyroid Function?

Have you ever had nutrients levels tested especially Vitamin B12?

I would ask for the following blood tests asap. If GP says you have had them, then ask for copies of the results with the normal ranges in brackets. You could ask for a print out.

Ask for Thyroid Antibodies blood tests: TPO and Tg. Also FreeT3; Free T4, TSH and T4.

Also:

Vitamin D

B12

Folate and

Ferritin.

As you have IBS you could have Diverticular disease which means you could have absorption issues. People with Underactive Thyroid can also have absorption issues.

Meanwhile, look on Thyroid UK and check the list of symptoms of Hypothyroidism and see how many you have. Lots !!!

Also look at B12 deficiency symptoms.

Look up symptoms of deficiencies in each of the nutrients on NHS choices.

It is important to ask for the Thyroid Antibodies tests because you may have had T4 and TSH tested and they may have been reported as Euthyroid which is 'normal'. But with the Autoimmune Disease - Hashimoto's - bloods can fluctuate. Only TPO and Tg results will give (or elliminate) diagnosis of Hashi's. Hashimoto's is the cause of Hypothyroidism in most cases (90% I have read).

Like you I suffered many symptoms and illnesses over many years. My Hypothyroid Blood results in 2008 were overlooked. In 2010 a Rheumatologist noticed them on computer and retested, but as they came back Euthyroid / Normal he said "Thyroid's OK" and diagnosed Fibromyalgia !!!! Wasn't diagnosed till late 2011.

I have

Hashimoto's Autoimmune Thyroiditis & Hypothyroidism.

Every cell in the body needs the hormoneThyroxine to function. No organ of any part of the body works properly without it. That is why an Underactive Thyroid causes so many illnesses/medical conditions.

Write a list of ALL your symptoms and a list of all your requests for tests and make an appointment with the most approachable, agreeable GP in the practice.

No, we are not Hypochondriac. Just need diagnosis and treatment.

I started on 50mcg of Levothyroxine and am presently on 75mcg. I also have presribed Vitamin D and Folic Acid tablets.

X🐥

1 like
Reply

Hi

Thanks so much for your reply xxx

I have been tested for thyroid function a few years ago, they said it was normal but I don't know what they tested for specifically, so I will take your recommendations in on Tuesday when I have an appointment with my GP (he's very agreeable).

Looking at those symptoms there are others I didn't even mention that I have, such as weight gain, hair loss, decreased libido and cold intolerance 😰 xxx

1 like
Reply

Do you know Nat, I wanted to ask you if you had unexplained weight gain, hair loss and low temperature - but thought my reply was getting a bit long and wanted to get it to you asap!

Take your temperature first thing every morning till you see GP. If it is ever low then keep a note and add to your list. Remember to add one if taking underarm. Under tongue - as read. Mine's been as low as 34.9. Keep a note of any less than 36.5.

It's best to see an Endocrinologist but many people seem to get treated by GPs, so I have read. That's OK if they get it right! I think the NICE Guidelines say that you should be referred to Endocrinologist if Overtly Hypothyroid and GP should contact Endo if not but if you have Hypo symptoms. Would need to read again to be sure.

Some of your symptoms might be B12 deficiency /Pernicious Anemia also ??

I asked my GP for an Ultrasound scan of my Thyroid (because a woman on the Thyroid helpline advised me too. She told me I have Hashimoto's! ). The morning after the scan he made urgent referal to Endocrinologist who arranged Short Synacthen Test to check my adrenals first before starting my Levothyroxine.

All the best for Tuesday.

Xxxxx Mary

🐥

Reply

I have had a colonoscopy recently and they didn't see any diverticuli, he managed to get round to my ascending colon too so saw a lot (and God did I know it)! 😖 xxx

1 like
Reply

I'm going to write down everything you've said and be armed for Tuesday lol! Thanks for all this I so appreciate it xxx

1 like
Reply

Hi Nat, like you I’ve had loads of bloods come back fine, had MRI for neck pain, have nighttime pins n needles, poor sleep, fatigue etc etc. I’m not depressed but do get fed up!

Never been formally diagnosed but I know my body isn’t right and I suspect fibro.

I’ve decided to say to the GP “my bloods come back fine but I’m not right-is it fibromyalgia?” Next time I go.

Old gp gave me Amitriptyline (poor results) , new GP has me on Gabapentin, which works quite well for me. He mentioned fibro but then said “oh I don’t like to say you have fibro to people because then people give in”

Well I’m one of those who likes to know what I’m working with instead of fighting against so I’m gunna ask the other new GP outright and explain why.

Maybe, if you suspect it you should just bite the bullet and ask? You have nothing to lose! You probably can’t feel anymore frustrated than you do at moment.

One last thought, it’s your body and you know it better than anyone so if it doesn’t feel right to you, it isn’t.

The only downside to being diagnosed is there isn’t a one solution fits all-you have to do trial and error with meds’ etc so sadly no quick fix but if like me it’s plagued you for a long time it’s a start to know what your working with

Hope you get some answers soon xx

1 like
Reply

Hey

Thanks for replying xxx I'm on Sertraline 200mg, Doc trying to bring me down to 150mg gradually as 200mg is so high. Been getting a lot of suicidal thoughts this last year and don't think the 200mg helps. The suicidal thoughts have subsided now though, as also come off the depo injection... as the doc said that could be causing it too.

I'm the same as you, I'd rather know so I can research ways of improving the problem xxx

Reply

You're right. It's certainly not diagnosed by blood tests alone. I was tested for instance for Vit D as a possible source of pain (was low and am now on supplements). You seem to tick a large number of boxes that would make me want to agree. Having eliminated the impossible, whatever remains, however improbably must be the truth (Sherlock Holmes). My journey seems to have been one of eliminating other things. I stopped taking statins for while to see if this was a possible cause of my pain. By and large doc and I then agreed it was fibro (I hadn't heard of it before). It would be great if your doc would just give it a name. It can then be easier to develop coping mechanisms and deal with issues like work. I wish you success in your search for an answer.

2 likes
Reply

Thanks fenbadger xxx I've also checked the tender points and get pain in 16 of them from what I can tell. Just feel like I've been given everything for everything else when there must me a central cause for all of it surely xxx

Reply

Thanks hun I will do when I see the doc Tuesday xxx

Reply

I spoke to my go about all the symptoms I had and asked if she thought it might be fibro. Referred me to a rheumatologist. When I went to see him I wrote down everything I was having pain or issues with. He poked and prodded and agreed I have fibromyalgia. Also possible other stuff but waiting for results. Don't be afraid to ask the question

Reply

Thanks hun xxx

Reply

You sound like you have a combination of osteoarthritis and fibro- is your physio good?

Reply

You may also like...