Fibrolyamgia - how is it diagnosed?

[Issy]

My GP now seems to think I have fibro - no-one told me and no tests have been done.

How is it diagnosed? and how SHOULD it be diagnosed?

[rosetrees]

I dont have fibro, but in my opinion it's a symptom not a condition on its own. It's a bit like saying a headache is an illness, or a painful finger is an illness. It's a symptom and you need to find out what is causing it. As I said, just a personal opinion.

[Hidden]

I agree with rosetrees. It seems to be one of those catchall diagnoses like ME/CFS when a doctor can't explain what is wrong with you. I once heard it described as ME/CFS but with more pain! Like ME/CFS it can be a symptom of hypothyroidism.

Check on the main Thyroid UK website thyroiduk.org and you will find it is a very common problem for those with hypothyroidism.

Also if you look at the tags section on this site you will see there are lots of folks who are also looking for explanations about fibromyalgia.

thyroiduk.healthunlocked.co...

Jane x x

[Janinit in reply to Hidden]

Hi Jane I was diagnosed with CFS but I had thyrotoxicosis which my doctor failed to test for.

[greygoose]

I agree with Rosetrees. It is a syndrome - i.e. a bunch of symptoms. But symptoms of what? Well, most Fibro sufferers find that all their symptoms disappear when they get treated correctly for hypo. That should give you a clue...

There is no test for it. And there is no treatment. It's an invented 'disease' that the lazy doctor can point to when he can't be ***ed to investigate your symptoms to find the cause. Or when he has no idea what he's talking about. He's just fobbing you off to get rid of you.

Personally, I would never accept a diagnosis of fibro, I would not allow it to be written in my notes. So many times I've been told that my lingering symptoms have 'nothing to do with your thyroid'! I ask well, what are they to do with then? Usually that is greeted with a disinterested shrug and a mumbled 'I don't know'. To which my reply is 'well bloody-well find out then!!!!!!!'. That usually works.

Hugs Grey

PS It helps if you have a list of tests you want done to hand so that you can just give it to the lazy so-and-so and let him work on it. Things like iron, ferretin, B12, D, etc. I usually go for liver function, too. Whatever takes your fancy, you know. You might not get them all done but at least he then knows that you are not just going to roll over and accept a lazy 'diagnosis' of fibro meaning that he doesn't have to bother about you anymore!

[Hidden in reply to greygoose]

G G, you really call a spade a spade. Love it!!! Well said.

Jane x

[greygoose in reply to Hidden]

There's a reason for calling a spade a spade. It's so that everybody knows you're talking about a spade and not mechanical shovel. x

[marmaris in reply to greygoose]

Very well said greygoose I just love your comments on this site. I too think I have Fibro, although I have been Hypo for the last 18 years and on guess what Levothyroxine 150mcgs. I have had very bad arm neck and general aches in my muscles for about a year now. Finally saw a Neurosurgeon about 3 weeks ago and he gave me Gabapentin (have not taken it), and I have an appointment on the 30th of this month (May), for cat scan. I like yourself believe it is Hypo. Recently had tests done and my TSH was 0.08 going over to Hypo. The doctors did not do my T3 for the second time (lab excuses etc), so put a letter of complaint into the surgery. Guess what that was 10 days ago, still no answer. Time to move on me thinks after 7 years of bad treatment up and down from 100mcgs - 150mcgs. How exciting I hear you say. So I have registered with a new doctor and see her tomorrow. However, just to get the appointment it is a system where the doctors ring you first to ask Why you need to see a doctor, I explained to him about not feeling well, Hypo for 18 years. He asked over the phone my results and he said well you just need to lower it a bit (which I already had done dohhhhh). So I hope these warning bells will not be true in my head and the lady doctor (with my 5 minutes), will be getting 18 years of frustration coming out and a bundle of notes that I will need a supermarket trolley to carry them in. Any advise? Apart from screeeeeeeaaam!

[marmaris in reply to marmaris]

Sorry meant to read going over to HYper

[greygoose in reply to marmaris]

Maramaris, a low TSH, of and by itself, does not in any way shape or form mean that you are hyper. Once you are on thyroid hormone replacement, the link between the pituitary - from whence comes the TSH - and the thyroid - which it stimulates - is broken and the TSH no-longer in any way reflects thyroid status. We can thank Big Pharma and their greed for the fact that doctors know nothing about this. Thank you, Big Pharma!

In order to know if you are over-medicated (NOT hyper) - and I sincerely doubt if you are on 100/150 mcg levo - you need to see your Frees, especially the FT3. If the FT3 .is above the range and you are presenting with hyper symptoms, then you are over-medicated. Although my guess is that your FT3 will be rather low given that you are only taking 100/150 mcg and you are presenting with symptoms that you consider might be those of Fibro. I would imagine that you need an increase, rather than a decrease, but then I am not a highly-treained specialist doctor, so what do I know!

Seriously, it's not good to continually up and down your dose like that. It stresses the body. Especially not on the say-so of the TSH. It is just fine to have a TSH of 0.08 - mine has been 0.01 for years and I'm still alive and slightly hypo. I would say pick a dose and stay on it for at least six weeks and then see how you feel. Get tested and see how it looks. But as there is very little chance of you getting your Frees tested in the UK, how about doing them privately? At least then you'd know for sure.

Hugs, Grey

[Janinit in reply to greygoose]

I totally agree with you... these diagnosis' are just an excuse for poor doctoring...!!

[Issy]

And what is the treatment?

To be clear, I dont suspect fibromyalgia - merely a past Vit D deficiency, and hashimotos

[greygoose in reply to Issy]

As I said, I don't think there is any treatment. Just pain-killers, I think. They treat all the symptoms individually. Not very scientific but there you go!

If I'm wrong, I'm sure someone will correct me. lol

What do you mean by a 'past' vit D deficiency? Are you being treated for the Hashi's? Do you have any blood test results to share with us?

[Issy]

Yes, I'm well treated for Hashimiotos. And I did a blood test for Vit D deficiency, then took supplements, then retested (original 38.8, final 90).

[JoanofArc]

Hello Issy,

Fibromyalgia should really be diagnosed by a Rheumatologist in my opinion. To have a definitive diagnosis you need to fit certain criteria. For instance, pain must be present in 11 out of 18 predetermined locations. These are referred to as 'tender points'. And that is just the tip of the iceberg really. There can be gastrointestinal, genitourinary, and central nervous system symptoms.

My GP told me many years ago I had Fibro. But in my case it was undertreated Hypothyroidism.

I was on Thyroxine at the time 50mcg and felt shocking. It induced Fibro symtoms in me without a doubt. But the musculoskeletal problems I had were in fact mucin swelling pressing on muscle fibres and causing pain, aching and stiffness.

I had to take action because I couldn't live like that. So I saw a private doctor and was prescribed Hydrocortisone and T3. Result; 90% improvement in muscle pain and stiffness. Other things I would suggest are pharmaceutical grade Omega 3, Magnesium Maleate, exposure to sunshine for topping up Vitamin D levels. Epsom salt baths, gentle pilates and if you can afford it myofascial release sessions. Oh, and a couple of glasses of Merlot helped tremendously! I think these things can be beneficial to Hypothyroid and Fibromyalgia sufferers.

Do YOU think you have Fibromyalgia Issy?

[Issy]

I'm goind to check that they havent added fibro to my notes - It may have been an off-hand comment.

No I am certain i do NOT have fibromyalgia

[JoanofArc]

What meds are you taking Issy, if you don't mind me asking?

[Issy]

NDT.

[JoanofArc]

Have you tried taking T3 on it's own? For me even the desiccated thyroid caused problems because of the T4. It took me 12yrs to figure this out. I've been on most of the preparations including Westhroid/Naturethroid, Thyroid-S, Armour, Erfa. Thiroyd etc...

It may be worth a try Issy. Honestly, I just kept going back to trying T4 and each and everytime it was the same outcome. Return of muscle pain, chronic aches and stiffness whatever the dose. It was just misery every single day.

I'm certainly not back to full health on T3 but in terms of it helping my muscle/joint problems it does the job adequately so that I can function. I don't even take hydrocortisone anymore.

Keep searching for answers. You'll make progress. Good luck!

[Issy]

i'm fine on the ndt - its just the GP mentioned fibro so i want to make sure it isn't on my notes

[Marz]

......I was diagnosed with FM by a Rheumatologist over 12 years ago. Had all the paianful spots matching on the left and the right. This was a downgrade from the GP's diagnosis who said it was PMR and wanted me on steroids. No treatment. I had already given up a career and started my own business so I could go home early in the afternoons, crawl into bed and sleep until I heard hubby's key in the door and would leap up and do supper ! Blamed everything on being ill in my 20's with Ileo-caecal TB and later Crohns. Diagnosis for Hashi's came in 2005. Fibro pains eased almost immediately - no longer felt as if I carried a sack of coal on each shoulder. The introduction of VitD has improved things even further. I am grateful to the information on this site......

[Issy]

How do you get a better sleep pattern though? Mine is much improved since taking the NDT, but a lie-in for me is 6:30am, with a 11pm bedtime, and usually an hour awake during the night?

[shaws Administrator]

This is a link:-

web.archive.org/web/2010122...

web.archive.org/web/2011041...

[marmaris in reply to shaws]

Very good articles Shaws and I am convinced that is what I have due to my hypothyroidism. Having a Cat scan at the end of this month after seeing a specialist Neurologist.

[Hidden in reply to marmaris]

Good luck with the neurologist, I've seen 2, 2 lots of nerve conduction tests, first one was nice and found arm nerves a bit sluggish and extra ribs in neck, 2nd one a waste of time said it wouldn't be my neck (no exam & I hadn't even sat down!) then I had the NCTs... mm... nothing found of course....

funny how my paresthesia, carpal/cubital tunnel symptoms gone after supplementing Vit D3 (muscle aches etc. GP had suggested CFS/ME too).

[marmaris]

Hello spareribs thank you for your comments. I have just looked on my appointment letter and it is down for the examination ofr MRI Spine cervical. The cervical being I guess the top of my arm that hurts the most. I am reading a lot about vitamin D and I have started taking it, along with numerous other minerals. Wish me luck I will let you know my progress.

[Hidden in reply to marmaris]

Yes cervical spine is your neck, I had pain/ache down arms from crunchy shoulder inc. bicep spaz, I've had 2 MRIs too, they don't hurt just a bit noisy! (first one found a thyroid nodule) as the pains were bilateral and it started in legs too I began to think it wasn't just my neck. All the best and keep us posted J x

[marmaris]

Thank you for that spareribs yes that sounds like the right areas and it is definitely the bicep spasms that I get, really painful almost like someone is constantly taking your blood pressure with the tightening arm band that they use. I do also have pains in my feet also and upper thighs when sleeping, if often wakes me up in the night. Also in my neck and difficult when driving as it is to turn head. I will keep you posted.

[penny]

Do take a look at Jan Trewartha's site about Body Realignment. This treatment, which includes myofascial release techniques can have amazing results.