What is it?

[Meows1]

TLDR:

GP believes it could be fibromyalgia, concerned it could be something else due to my difficulty with walking (other than the pain, this is my most concerning symptom).

Any suggestions on what it could be and how i can ease the symptoms?

SYMPTOMS - onset July 2023• Dizzyness

• Lightheaded

• Body aches/muscle pain - top of arms (can feel like an injection), shoulders, neck, back, knees, legs, ankles

• weak wrists

• Difficulty walking/unsteady gait

• General full body weakness

•Full body stiffness

• Fatigue

• Feeling cold

• Headaches

• Lack of concentration

• Memory difficulties

OFTEN (most are weekly)

• Nausea - not occuring after eating

• Flu-like symptoms i.e sore throat, blocked nose, runny nose, swollen glands

• Stomach ache

• Diarrohea

• Slow healing wounds

• Random bruises

• Migraine (about once every month or two)

• Shakiness sometimes after awaking from a nap or in the evening

•Chest pain onset. heartburn?- not happening after eating, not lying down after eating, dont eat spicy food, dont drink alcohol

•Ear pain

• Jaw ache

• Pain on both mastoid bones

• night sweats

• Tightness around abdomen, starting below the ribs

IMPACT

• Work, having to take time off or finishing early

• Difficulty focusing on uni

• Not enough energy to continue with volunteering

• Not enough energy or in too much pain to: cook, shower, go to my allotment, get out of the house, cleaning

• Mood - increase in depression, anxiety and irritability

• Frequent use of otc meds: paracetamol, ibubruphen, co-codamol, asprin, buscapan, renny

WHAT HELPS?

(Doesn't get rid of symptoms but can help a little)

• Lying down

• Naps - daily for about 3 hours

• Salty food

• medical cannabis

• amitryptaline

WHAT MAKES IT WORSE?

• Stress (Prolonged)

• Lack of sleep

• Exercise

• Bending down/getting up - sometimes even if done slowly

• Dehydrated

• Usually things get worse about an hour or 2 of being awake.

HISTORY:

Autistic, endometriosis, IBS, gilbert syndrome

HAVE HAD:

• Colonoscopy - all clear

• Coeliac screen - negative

• EBV (evidence of past exposure)

• Full blood count - normal other than frequently low white blood cells (for 10 years) and regular low platlet count

• low iron - but now had prescription for this

• blood pressure and ecg done all normal

[cyberbarn]

Have you looked at the type of hypermobility that goes with autism? you could find more information about that from EDS UK or HMSA, two uk charities that might help.

It sounds like you might have a dysautonomia such as POTS, and some gastrointestinal issues. People with EDS/HSD are often misdiagnosed with fibromyalgia.

[Meows1 in reply to cyberbarn]

Hey Cyberbarn, thanks so much for replying to my post.

Ive had people mention EDS/HSD a few times, but i do not think im double jointed or have particulary stretchy skin?

I did suggest PoTs with the GP and i think this has been dismissed due to my heart rate not being consistenly abnormal. I.e sometimes high, sometimes very low, good chunk of the time when they test me its normal range

[bookish]

Hi, a lot of that could be due to problems with vitamin B12. Either straightforward deficiency or functional/cellular deficiency, and given the endometriosis and autism, possibly methylation and detox, glutathione, COMT polymorphism etc. IBS may be contributory or a symptom, but won't help absorption. The low iron commonly masks signs in the blood (like MCV) which if high would indicate a B12 deficiency - alongside an iron deficiency, MCV could be low, normal or high, so it gets missed. With Gilbert's you also may have trouble getting it spotted gilbertssyndrome.org.uk/b12...

B12 testing is poor, confusing and may be misleading for some. You can have a deficiency at any serum level because that only shows what is in the blood, not what is getting to the cells or how it is working within the cells. Have you had a serum B12 test and a serum folate, and do you have the results? Assuming that you are not supplementing (which will skew the results in a very awkward fashion), that would be the place to start. Those cannot rule out a deficiency, in fact no test can, but could find one. There are other tests which may also help if those don't or are equivocal. If folate is low, please do not supplement that alone (or let anyone prescribe) as the B12 has to be sorted first to avoid the risk of making it all worse.

Has anyone checked your thyroid? EBV has a nasty habit of lurking in the colloid cells of the thyroid and slowly destroying. And B12 and thyroid go hand in hand, affecting each other. Cheers

[Meows1 in reply to bookish]

Hi bookish, wow what a lengthy response. I really appreciate all of this information.

Sorry there is possibly info that has been missed out as i was rushing to post this.

I am b12 deficicent - diagnosed possibly 2015. I am on b12 injections every 12 weeks for that.

I have a vegan diet and have done for about 10 years, prior to that i was vegetarian for 5 years.

I dont understand any of this: 'given the endometriosis and autism, possibly methylation and detox, glutathione, COMT polymorphism etc' so i will have to look up what those mean!! But thank you.

Thyroid has been tested numerous times but nothing weird comes up...

From February

Serum Ck - 89 u/L

Serum b12 - 371 ng/L

Serum Folate - 8.6 ug/L

Serum C reactive protein - 21 mg/L

Serum TSH - 1.23mlU/L

MCV - 88.6fL

[bookish in reply to Meows1]

Hi, no problem. Did they assume that your B12 deficiency was dietary in 2015, or did they do any other testing? To me, 371 looks low for someone on injections, even only every 12 weeks. It is still low enough to be triggering symptoms. I would have expected you to be maintaining 800 or 1000, although I may be wrong. Folate is not that high either, given that your dietary intake will be high. B12 is not usually retested once you are on injections as it will be high (should be high) and it doesn't correlate that well with symptom reduction - so you look at symptoms, not blood. I'd got my serum B12 to top of range (>2000) with oral supplements but wasn't metabolising well, so even though bloods looked fine I am not, and am getting benefit from injections. It may be that there is another reason that you need more B12 - malabsorption, medication, genetic (any family history of pernicious anaemia or B12 deficiency? metabolism is strongly genetic), epigenetic - and that it wasn't just dietary then, or was then but isn't just dietary now. If they only said B12 deficient with no other testing, then I would be thinking perhaps to ask for anti gastric parietal cell antibodies and anti intrinsic factor antibodies to be tested, preferably as far away from an injection as possible - so just before the next one is due. You could also ask for methylmalonic acid and homocysteine to be tested, although you may not get anywhere. Do you have a neurologist, given the walking problem? They might find it easier to get those tested, although from my own experience they also don't get enough training on B12 to understand how complicated it can be and how easy it is to miss or misdiagnose. As you are deteriorating symptomatically, I would hope that they would give you fresh loading doses and more regular injections.

As to the other bit, most people (all, I expect) have what are called polymorphisms or SNPs - genetic variants which need to be expressed or activated before they do anything. Some are beneficial, some problematic, most probably do nothing, or not in an 'affecting your health' sort of way. It is unlikely that a single SNP will cause much of a problem, the interesting bit is when you get number of variants in the same area - like the one carbon cycle which includes the folate cycle and methylation. Then you may find that you need different forms or amounts of B vitamins, which all work together, and things like magnesium to support those variants to work in the best way. Generally once you know about these you can change diet, lifestyle and supplements to mitigate any less than ideal processing, but unfortunately we often don't know, until we get ill and start digging! You may not be clearing waste products fast enough, or metabolising oestrogen well, or neurotransmitters may be too high for too long. Glutathione is the body's 'master antioxidant' and if you don't have enough, that may be a part of the whole for you (I have a glutathione-absent gene, so I am slightly deficient and supplement accordingly). COMT affects neurotransmitters and oestrogen and is magnesium dependent. Mine is slow (some are fast, some 'normal') and magnesium supplementation made a vast difference to me. I have read that both autism and endometriosis may have connections to COMT variants, but not only that, of course. Micki Rose's site has info on both which you might find interesting purehealthclinic.co.uk/heal... and purehealthclinic.co.uk/endo... and purehealthclinic.co.uk/heal... . The testing links may be out of date, but plenty worth reading and she is very approachable (no connection, but I have used her for some testing and reports). Hope that helps. Best wishes

PS fibromyalgia is not an acceptable diagnosis, once you get stuck with that all else will be dismissed and blamed on that. I have it too.....but I also have small fibre neuropathy which causes 'fibro' in about half of sufferers. And fibro is also linked to COMT. And there are many causes for SFN, low B12 being one, thyroid being another. If you get a neurologist, they should test for small fibre (thermal threshold testing) as well as nerve conduction studies.

Sorry, got a bit carried away there.....good luck.

[klr31]

Get your actual thyroid numbers as often 'okay' isn't, even though docs might think so. Check D too. I note that you've had folate, ferritin and B12 done. A lot of your symptoms could by due to hypothyroidism. Try to have thyroid antibodies checked if you can.

Karen