Not sure

[Larnian]

Hi all

I’m really not sure about my fibromyalgia diagnosis.I have been going back and forth to the drs for the past year or more and recently at my own request went to see Rheumatologist who diagnosed me with fibromyalgia but he didn’t do any tests he just spoke to me . The reason I am having doubts is because I don’t suffer with any fatigue or pain I just have electric like shocks (that can be painful)all over numbness tingling cold spots on my skin and other crawling sensations.Is there anyone else out there like me ?

[Hidden]

Yes,the thing is with fibromyalgia you won't have every symptom when being diagnosed usually but you may eventually that's why I wasn't diagnosed in the beginning I had problems on one side but not the other I said shocks and tightening when they said spasms ,what are all your health symptoms over last five years if you don't mind my asking.?

[Larnian in reply to Hidden]

Hi no I don’t mind I’m great full for any advice .I started off with vertigo and from there started having muscle twitching .Doctor said it was nothing to worry about probably anxiety Iv been for scans seen neurologist all said I was fine .But still it hasn’t gone away .Finally told it was probably fibromyalgia last month ,I don’t seem to get fatigue and pain others have though so don’t want to rule out anything else just yet

[Judithdalston in reply to Larnian]

Have you been tested for low B12...tingling and vertigo are symptoms? Fibromyalgia is diagnosed by exclusion in part, ie scans and blood tests rule out other likely things, but I would have thought ‘pain’ mirrored on both sides of the body were typical thus the paired points that get tested by rheumatologists.

[Larnian in reply to Judithdalston]

Hi

Yes I have been tested for b12 as well as thyroid and lots of other things all came back negative.Doctor said I might wake up one day a realise it’s all gone away .

I am now doing a good diary to try and work out if anything make symptoms worse

[Judithdalston in reply to Larnian]

Do you have the results with ranges to share? Presume you don’t take B12 or B Complex supplements, and if you do, you stopped them a week before B12 tested. Was it a B12 active or serum test?

[Larnian in reply to Judithdalston]

Goodness I don’t know the answers to any of those questions I guess I could phone dr and check

Thanks

[Judithdalston in reply to Larnian]

In U.K. surgery has to give your results as print out...so ask the receptionist not the doctor. If you are asked which test results ask for all....but specific to what you mentioned B12(Active or less likely serum), thyroid TSH, FT4 and FT3 and thyroid autoimmune antibodies( TPO, again less likely TgAb). What about other like folate, ferritin, vit D? I have hypothyroidism, Hashimoto’s autoimmune thyroiditis, insulin-dependent diabetes and fibromyalgia and recognise they are all interrelated, but dr.s have habit of saying bloods ‘normal/ok’ when they are only just in range!

[Larnian in reply to Judithdalston]

Hi Judith Iv been in Doctor’s today and got my blood results :- b12/folate level serum 438ng/L(197.0-771.0)serum folate level9.0ug/L

Doesn’t make any sense to me any ideas ?

[Judithdalston in reply to Larnian]

Partially: the range you gave for the serum B12 is lower than ‘usual’ at 197-771, usually say a result of 550 or over is good but that is with a slightly higher ( 211-911) range...proportionately

your B12 is a bit low, should be about 480 and above I believe. The folate you have a result, 9 ug/l but no range. It should be about half way thru the range; the range my lab uses is 5.4-24/ug/l....same unit, so unlikely I would have thought that yours would to be vastly different...so your folate would be better at 15-16 plus. So they are not bad results, acceptable to gp, but could be better, so I would consider supplementing...best to do B12 with sublingual ( under tongue) dose, and folate 1000mcg dose ( from internet). If you take any other don’t supplement with multi vitamins, but good quality single compounds.

[Larnian in reply to Judithdalston]

Thank you I’ll give it a try x

[skit]

If a specialist says you have Fibro then acceptance is the key.If you have been to and fro to GP those vital notes will have got to rheumi. The consultant often just lets the patient talk to get idea of general health and why the sufferer needs help. On the first visit no hands on always occurs. Subsequent visits maybe a treatment plan is discussed. My Rheumi only does hands on if I mention a particular area. With a long term condition like Fibro your relationship with medical world becomes a partner ship not spooned advise. I would urge you to get on sister site fmauk.org and get a patient booklet to inform yourself.

Gentle Hugs

[Judithdalston in reply to skit]

Where I live you get the tests( bloods/scans) done thru Gp, then 1 referral to rheumatologist, who did do a good clinical history, then did pain points from feet upwards, and diagnosed fibromyalgia. That’s it, no other appointments...amitriptyline after GP gets hospital letter, no discussion re. treatment plan, no follow up with Surgery. So must be a postcode lottery what you get.

[Larnian in reply to Judithdalston]

Same here I didn’t get any follow up appointment .The only way I’m learning is by reading other people’s stories and good old goggle

[Judithdalston in reply to Larnian]

Yes, that is the best thing to do, I think doing research and ‘treating ‘ yourself ie taking positive control of your own health is the best we can do!

[Dirk_Pitt]

What you described to him was neuropathy. Neuropathy. That is often the only symptoms Fibromyalgia patients have. He probably prescribed GABAPENTIN for you. That usually takes care of th symptoms you described

[Larnian in reply to Dirk_Pitt]

No I’m on progabalin but I’m trying to cut right back reducing from 150mg to just 50mg at the moment

[Judithdalston]

Post them here, I am quite good at it re mins/vits, all thyroid results...and some others , as have learnt to be. There are probably others on forum too who could advise, or point you in right direction.

[Larnian in reply to Judithdalston]

Ok I’ll do that thank you 🙏

[Chiara745]

Hello Larnian,

Usually Fibro is diagnosed by assessment of the main pain point on your body. I would request a re assessment. Also worth being referred to NHS hospitals specialist that is well informed of fibro. I was diagnosed this way all the main pressure points were too sensitive/painful to touch. I kept seeking the right Drs , until I found the right Rheumalogist and Integrated Medical Care

All the best

[Larnian in reply to Chiara745]

Thank you I will talk to my doctor and ask for a reassessment not sure if we have a specialist Rheumatologist in this area or how much help I will get I have spoken to lots of doctors in this past year and have been constantly fobbed off

Thanks again