Nackapan

I think you ate right. My daughter was 'fobbed off ' with a fibromyalgia diagnosis

She does have joint pain and at that time no other diagnosis.

Beware of that being g on your notes as investigations can stop.

When possible I would keep pushing for further I vestigations.

I'm on a si.ilar situation 2 years in and need to turn another corner.

Mone definitely a vestibular disorder.

Going by how my body reacted to a recent 'sonic boom' definitely nervous system involved.

I have regular blood tests reduced to 4-6 monthly now.

Including

Thyroid iron folate ferritin vit d and anything else I can get.

Om not on medication but am amazed at what 1 ibuprofen can settle at times

So more time and monitoring needed.

I've been offered many drugs. I have tried 3 but off them .

Most just aggravated my nervous system

We all need something to teach for when needed though.

Gps work on trial and error to treat symptoms. I hope you find a way to turn a corner

I was on 2 weekly b12 injections for over a yest trying to get to monthly.

Didnt work for me.

I'm presently every week. Rollercoaster but crawling up the hill 🤞 I long now to just sit and relax with a glass of wine to watch a tv programme or film. Not happened yet .

Ctadds1 in reply to Nackapan

Some days ibuprohen is my life saver!

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Hidden in reply to Nackapan

You probably already know this but ibuprofen is an anti-inflammatory. You might want to look into anti-inflammatories. Antidepressants also have anti-inflammatory qualities. When I was on Wellbutrin I noticed a lot of my fibro-ish symptoms went away. In general I had less pain. I have seen articles written both supporting inflammation as a cause of depression and refuting it. I suspect there are many types of inflammation and that is very much a root cause of depression. That would also open the possibility of food allergies.

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JanD236

A level of 1,500 doesn’t strike me as high given that you’re receiving injections. Mine (and others on this forum) have levels that are above the maximum recordable point which is 2,000.

Whilst I didn’t have all the symptoms you mention I did find that I didn’t finally shake off the exhaustion and brain fog and get my full life back until I had a twice weekly injection frequency. My GP was willing to give an injection every two months and then monthly but I still had symptoms in the lead up to the next injection.

I went from every 2 months to monthly to weekly then twice weekly where I’ve settled for a couple of years or more.

I feel that with your neurological symptoms the GP should have treated you as per guidelines, ie continue every other day loading doses until no further improvement. I also feel that you should ask for a referral to a neurologist in view of your neurological symptoms.

wedgewood

You could try more regular injections as janD236 suggests . . Absolutely no danger of overdosing , no matter what the GP says . It might prove difficult to get . In that case come back here for further help ( I.e. self-injections ) . I need to inject weekly and my B12 readings are off the scale ( I.e. over 2,000)

Sleepybunny

"Anyone else have a Fibro diagnosis"

Yes I have and I'm sure it was because the rheumatologist wouldn't accept that my symptoms were due to b12 deficiency.

The Fibro symptoms are virtually non-existent providing I get enough B12 and creep back slowly if I start to increase gaps between injections.

Do you know what your iron and folate levels are currently?

" get B12 injections monthly (maybe this isn’t frequent enough?"

I have heard of some people needing to inject daily to get relief from their symptoms...we're all different in what treatment we need.

"became very ill in March of last year. In July I was diagnosed B12 deficient"

If you think back over last few years, when did you start to notice symptoms suggestive of B12 deficiency? Symptoms can be very minor to start with then gradually get worse over time.

It's possible to develop some permanent symptoms if left untreated for a long time and some symptoms take longer than others to start improving.

Have you been referred to a neurologist?

I think you mentioned you are in US in another thread.

Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some US members.

pernicious-anaemia-society....

B12 Awareness (US website)

b12awareness.org/

US link about PA

rarediseases.org/rare-disea...

B12 article from Mayo Clinic

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency.

B12 Deficiency Info website (UK website)

b12deficiency.info/

I am not medically trained.

Bing67

Hi

I inject alternate days. Neurologist started me on Cymbalta which after a month of not tolerating I decided that "the hug" I got across my chest was worse than the side effects and now tolerate well.

I do not have a diagnosis of fibro and after 5 months of alternate days my B12 was 1400, if I try to go passed alternate days the neuro symptoms come back in my arms, hands, legs and feet.

The only thing that Cymbalta changed was the ribs and although this was uncomfortable I also feel that my symptoms are not fibro.

I am awaiting more follow ups but am struggling on a day to day basis trying to manage. Hoping I will get an answer rather than a fob off.

I would not recommend Cymbalta for the side effects however now that i am used to it, it is helping one symptom out of the many.

Take care

Nackapan in reply to Bing67

I hope things will improve for you.

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Nackapan in reply to Bing67

Rezlusez k was prescribed duloxetine which I think I'd thd same drug . I decided against it at present. Would you mind saying which symptoms this drug helps with please.

Some days feel i need to trial a drug.

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Bing67 in reply to Nackapan

Rib pain like MS hug - banding pressure across ribs and also aching legs.

Took a while to tolerate it although I am struggling to tolerate any new meds

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Nackapan in reply to Bing67

What does it alleviate?

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Bing67 in reply to Nackapan

Answer in above reply, ribs 😃

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waveylines

I inject twice daily otherwise tremors increase and incontinence comes back. Gluten free has really helped me and is calming my tremors. I also take Thornes basic b to balance out all the b12! And a high dose sublingual methylcolabamin once daily. Im miles better than I was two years ago..

Nackapan in reply to waveylines

Do you have all sc or dk you have IM sometimez? I only ask as I usually have IM 6 weekly. Last time it was 8 weeks . I really was ery symptomatic again but picked up for a couple of days significantly after IM . Or it mat have been it got in alot quicker??

Just wondered . I do sc everh 6th day . Do you find any difference where you inject ?

I think it goes in quicker if I do the sc in mh stomach.

Glad to hear going gluten free has helped you.

Buckwheat noodles and pasta tasty and you can buy so much gluten free now. Mh daughter has a very restricted diet . Ivd learnt to cook and eat all sorts tk uses it uk as shes been unable to visit!

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waveylines in reply to Nackapan

Thanks Nackapan. I was so ill over xmas that once I started on the gluten free I really noticed the difference after a few days, took a while for the abdomen pains to go away.......three weeks plus on & I am so much better. I still have tremors but they have quietened down a little and my digestive system is beginning to become more regulated. Ive a feeling that gluten may have been at the back of a lot if this. Not finding it hard to transfer across......as there are plenty of products. Eating out will be another story but not likely to be a problem for a few more months!Ive not bought any more Methylcolabamin vials as am hoping I wont need it now!

Subcut takes longer to get into your system but I cant say if any product gets lost on the way as I dont believe its been researched as a method for injecting b12. Somebody may put me right on that......!! I find it takes 2-3 hours to kick in. So no immediate effect but I notice my tremors calm.

How are you?

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Nackapan in reply to waveylines

Up and down. I'm now having it change my diet as all the attempts to get more b12 via food has raised my cholesterol !

Weakness and head fragility and vision my main problems.

Still waiting for that gkass if wine and ti be able to watch tv read a book or have an overhead light on.

Am improving overall though but very very slowly.

Taking my mum for her covid vaccj action cost me two days to get over.

Quite ridiculous and frustrating.

Hooe you continue to find ways for a better quality of life.

Sounds like you have all sc.

I seem to need an IM one every few weeks?

Just wondered if it would make any difference for you.

I prefer it going in more slowly but at times it appears need that quick boost if b12. It seems so short lived though at times .

Take care

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waveylines in reply to Nackapan

Glad you have had some improvement Nackapan even of its slowly. Am improving on the gluten free regime so will see where that leads me first. Its so frustrating when you want to do things but you cant.

Have you tried gluten free?

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Nackapan in reply to waveylines

My problems are mostly with my central nervous system /vestibular system. So do include good fats. Almond avocados ect I make gluten free for my daughter when here .

So have had gluten free days.

Ag present I'm fine eating a mixed diet including gluten .

Just a few tweaks like adding pulses to meat dishes . Trying to eat a bit more fish (not keen)

Lowering saturated fat

Mist veg from allotment. So kale and chard and broccoli shoots plentifukbat present. As is cabbage and parsnips.

I incorporate them in dishes to inthe amount I can eat . Always had it but in small portions.

I fi make seed bread when well enough with buckwheat flour . Nutritionally dense. Toasts well from the freezer as very short shelf life No additives!!Rightly or wrongly I gmdo have daily smoothie or fruit juices . This started when ill?

High in sugar but must be a bit healthy for a sugar hit.

My youngest daughter has worked hard with nutrition and a new wat of eating . The dietician supports her but hasnr taken the lead?

Gluten free has really helped alot if het symptoms . Her diet is still very restricted but she is trying to add more foods again. Fodmap as a guide now. It's so individual she tried coconut milk recently with success which opens up more variety.

Almond milk was an early saviour and her brand is fortified.

She is diary free too.

Frustose free

Still cant digest red meat but had chicken. So don't need ti ve improved . Chia seeds a good binder . .yoghurt and berries good. Loads of seeds and nuts. Chickpeas for hummus but no garlic or onion.

Most food from scratch which is hard work. I'm amazed at the raw food like sweet peppers and rocket she tolerates. I coukdnt eat that

There is an app you can put in what tih eat to calculate nutrition.

But then it's what yoh csn absorb.

A mine field

Hope you can experiment more to help you.

I eat the same as my husband buf less.

His blood results very different .

So it's how our bodies use it ect ..

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waveylines in reply to Nackapan

Completely agree! Once off the gluten for two weeks my system has been quite tolerant so am hoping I wont need to use the Fodmap......🤞🤞 I have avoided rich or highly spiced foods whilst my gut is healing. Am still on dairy keen to keep it as the estrogen blocker Im on leads to weaker bones.....so need the calcium. The lead proff H in the world has evidenced that neurological symptoms can be the first sign of gluten intolerance and there is a group of people who dont get digestive symptoms due to gluten intolerance. I was in that group but eventually got the digestive symptoms. Vestibular is still linked to the brain, neirological, so its worth considering excluding gluten for three months to see if it helps.....though you have probabaly already trialled this? This is what the proff does with his patients. Gluten intolerance is now recognised by the NHS as a separate condition to coeliacs.

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Ctadds1 in reply to Nackapan

Do you inject 1000mcg every time? Do I assume when people say they inject daily (or what we it may be) that it’s 1000?

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Ctadds1 in reply to waveylines

How much do you inject? Is every injection 1000mcg?

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waveylines in reply to Ctadds1

I inject a full vial yes

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palmier

It's important to understand that the neuro symptoms can be caused by the previous b12 deficiency. I read somewhere that 6 months of deficiency can cause permanent nerve damage. It can get better but recovery may be slow. High doses of b12 seems to help with symptoms and recovery, even when you're no longer deficient according to standard tests.

waveylines in reply to palmier

Indeed......but although I think recovery takes a long time.....still improving two years later!

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mcg-woo

It’s still relatively early in your recovery process. The key is to receive frequent injections for a long period of time so that your body can continue to recover as much as possible.. Some symptoms are slower to resolve than others. I continued to improve over a two year period, but I didn’t have loading doses and weekly doses were cut back to once every other week after dr tested my B12 and panicked that reading was over 2000. I feel I would have recovered sooner with a longer weekly injection schedule. I am symptom free with adequate injections. There is hope for you. Hang in there!

Ctadds1

Thank you for the reply. You all give me so much hope for the future.

jacwright

Hi all just read last chat. I was first wrongly diagnosed with polymyalgia 8 years ago (which was fibro) confirmed 2 years ago by neurologist at the national London where I had investigations for vestibule dysfunction dysautonomia. two consultants confirmed B12 d causes fibro and CF.

Ctadds1

So is it possible to heal the Fibro if we can heal the B12?

waveylines

Claddds I think the thing is to correct and treat long termly with plenty of b12. Ive been diagnosed by nhs neurologist as having an Orthostatic tremor supposedly a rare condition that Is degenerative the cause of which is not really known. There is no known effective treatment. Frequent B12 jabs and more recently gluten free diet has made a massive difference to me. Neurologist wants to research b12 & effects on tremors as many have commented to him that b12 helps. So my advice is to make sure you dont short change yourself. A famous us doctor believed that Fibromalgia was caused by dysfunctions in body and by correcting those dysfunsctions he was able to resolve most cases of fibro but not all. Dysfunctions were usually hormonal, vitamins & minerals. Treating them optimally gave fantastic outcomes for many.

Ctadds1 in reply to waveylines

Are your tremors internal or external? I always feel like my insides are shaking. I do not physically shake externally.

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waveylines

Mine are external tremors. Internal tremors as you describe commonly occur with adrenal insifficiency. You may want to check your levels. The 24hr one is the best as you take samples several times through the day. I dont have a great knowledge on adrenals but do look it up and there are others who have a lot of knowledge if you dont get much of a response on this grooup you could try posting on thyroid uk....there are some epople on there who know a lot about it.