I’ve been taking these in this form, and a multi-vitamin also in liposomal form for just over a month now, and I feel so much better able to cope as my pain is eased, most days it’s tolerable with pregabalin, amitriptyline plus tramadol and now not so many paracetamols. I actually forgot to take these vitamins one day after about three weeks, and the next day I was back to a really bad day again. I’m not sure what is going on here, maybe my levels were just really low, I have a good tolerance to pain, but fibromyalgia has made my life ( and as a carer too) so so hard, jus as I’ve read others have on here as well. I’d like to say I’m glad I’m not on my own, but I hate the thought of others suffering so much it makes my cry if I don’t keep a grip. Sorry not in the best of places emotionally lately, sadly lost too many people,(before covid) and the lead up for five years, was, still is so hard to keep a lid on. (I also had a narcissistic sister!)
Anyway I just wondered if anyone has any experience with these vitamins in this form?
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mrspippy
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Hi there! I’m afraid I don’t take these, so I can’t be of use in answering your question, but I did want to say that you don’t need to apologise for asking a question - there are no silly questions here 😁, I’ve found this group to be so helpful and supportive ☺️
I can definitely relate to the feeling of appreciating that other people understand what you’re going through - even though it means others are in pain/exhaustion etc.
I do hope you start to feel more yourself soon and definitely keep using this forum to share, vent, question, etc - these wonderful people have certainly helped me through some dark days and I’m sure they will do again!
Good morning mrspippy. I only take tramadol to help me get to sleep if paracetamol and fatigue doesn’t work. I’m reluctant to rely on opioids. I take multivitamins and eat lots of fruit ,veg and fish in my diet. Exercise is a must, as I believe, if you don’t use it you lose it”. I’ve tried massage and am contemplating palates. Massage helps with the knots in my muscles . Even though exercise hurts next day, I don’t want my muscles to disappear! Different things help different people, but we have to try and stick to what helps us individually. I get really bad flare ups and can’t fathom why ! Music is a great distraction. Do stuff that makes you happy and distracts you from the pain. I hope you feel a little better soon. Wishing you love and big hugs xxx
I am very sorry for your losses and can empathize with you as I have lost a number of people in the last few years , including my Mum , and it does take a big toll on us.
I do take extra Vitamin D and use a vitamin daily supplement which has Vitamin K2 ( instead of just Vitamin K/K1) in it every day , and I regularly advice people to try to get more of these vitamins ( along with Vitamin C and B12, pure Omega 3 and magnesium) either through diet or diet and supplements , as long as they are allowed to use them with their medications.
I advise people of this from my experience of coping with Pain as part of Self Care for more than 25 years.
There is a lot of medically researched evidence for all different Chronic Illnesses and syndromes that show increases of these vitamins and minerals make a significant improvement in pain levels for all Chronic conditions , including Fibro.
I don't take liposomal form specifically, but I do advice that people take any vitamin supplements during or just after their fattiest meal of the day. Why?
1. Because your supplement passes through your system as you digest food at a slower rate so there is more time for your body to absorb it. In other words , you get the benefit of the supplement rather than making very expensive wee!
2. Because many of our most important vitamins are fat soluble , so they need to dissolve in fat to be absorbed properly, therefore, more of the supplement we took is absorbed.
Fibro and all Chronic Health conditions have one big thing in common.
They force our bodies to use up more water and vitamins and minerals 24/7 to be able to function and perform the healing and recovery process that we need and rely on with a chronic illness.
Often , if we don't increase the amount of these essential vitamins and minerals we need for this function , and drink more water , we become dehydrated and low , or worse deficient , in these vitamins and our symptoms get worse because of these deficiencies.
Vitamin K2 is different from the Vitamin K which we usually think of which is in charge of clotting. Vitamin K2 is involved in metabolism and helping the nerves and brain to function more smoothly . It is hard to get from food alone .
Vitamin D has a huge role in many body functions , healing , pain and nerve management and joint and bone health. We can use more than double of it in a day in comparison to a healthy person. Again hard to get from food or consistently from the Sun , especially in Winter or for people in certain cultures.
Painful, aching in the joints and bones can make it wise to have your vitamin D level checked with a blood test at the GP. Low Vitamin D or Vitamin B12 are often the cause of increased and very painful bones , joints and muscles.
Vitamin C helps in the healing process but also helps us to absorb Iron and many of the vitamins better .
Magnesium improves metabolism , nerve and brain health and can reduce the tingling nerve pain in hands and feet and clumsiness.
Vitamin B 12 is essential to maintaing the health of our organs , especially the liver , brain , and our joints and muscles.
I only take Omega 3 , and not a combination Omega supplement , because Omega 6 has an inflammatory effect on the body and can increase pain in many chronic conditions.
Since I began to increase my intake of vitamins and minerals each day , especially Vitamin D , and my water intake, I would say my daily pain score reduced by as much as 25%. Adding in pacing activity and gentle , short and consistent exercise I would say that I have less flares and my pain scores can be 50% lower.
With the medications I have to have for my various chronic conditions , and the lowest doses I can manage with of pain medications , I run at 85% pain free on flare or infection free days .
In pain conditions , we won't be 100% pain free , but anything above 75% pain free allows us to have a good quality of life maintaining most of the activities we want to do even if we need to do them at a slower pace.
And like you , if I run out or forget to take them for a few days the Pain , Fibro fog and Fatigue do start building up again.
Thank you blearyeyed,I’m starting to well up as I type, on top of this my husband of 37 years has been brain injured for 32 years, so I’m also his carer which is hard, but it’s like I’ve got two of him, the before and the after, ‘him’, at least in my heart and memories that is, well memories when I can bare to look back to our time “before” as that loss is so so painful, and I politely ask that no-one suggests I try to ‘grieve’ for that loss as he is still in there somewhere and I refuse to say goodbye to that him. I say this because it’s been suggested before. But I can’t and won’t say goodbye. He even comes back for maybe a minute every few years, which is lovely but so painful, I’m sure most here can understand.
I came here after reading through a lot of posts. I used to belong to an Amazon customer forum, where I made just a couple of friends, but that closed, and even before we’ll things sort of fizzled out, mainly due to my fault, well everything that was going on, and to be honest the fact I find it so hard to trust having friends as since my hubbies head injury all the what we thought were friends just disappeared, due to us not being able to socialise so well or reliably.
I’ve just been reading the lady who is not coping with housework, and the replies, and can relate to most of you all, our flat is a tip, I’ve got so much washing built up to do, it’s crazy, and the rest of it all…….it’s just like such a huge mountain to have to try to climb. Having a lot of mums things here to sort through, dotted about here and there, things I’ve not found a place for since moving here 9 years ago……..it just seems unmanageable just now. There is so much, but I can’t even cope with talking about it all. I’m going to contact our local carers group, get to see a prescriber nurse ? ,and make an appointment to go to talking therapy, when I can…..
thank you for your reply, it means a lot to know my question wasn’t silly and that I’m onto something with these vitamins, I’ve also tried the b12 which I thought was helping so I’m going to get some more now, as to the omega, I have to be careful. I have an acute allergy to all fish and seafood, anaphylactic allergy levels. So I’ll look into that. I’m trying well not used to eating fatty meals , well I don’t know maybe I do, but I’ve also had heart attacks, all on the same day, but all while in the hands of medics treating me for the first, If that makes sense, maybe it was just one and they were trying to stop others going into full blown ones…..it was too painful literally, to ask, but in the hospital in the following days while awaiting them trying to discover if the iodine they needed to use to put stent into my right side main artery came from “sea water” origins due to my allergy, they referred to them as ‘them’……
but I’ll look into omega to see if I can find a right omega for me. Even flaxseed affects me badly.
Wow! You have got a lot on. I was the one who wrote the post about struggling with guilt because I couldn't cope with house work. The responses I got were so helpful and it meant a lot to know that I wasn't alone.
You are not alone in this. We're all here for you. No one thinks you are silly either so you can feel safe to ask whatever you want 💕
You can get Vegan Omega 3 , actually called algae oil , but you should probably ask your GP to get you an intolerance test for algae in case it is the algae that causes you allergic reaction ( the fish and shellfish feed on algae that is why they are a source of Omega 3 themselves). If you also struggle with things like Flaxseed you may be better just leaving off the Omega 3.
You don't have to get all of your vitamins and minerals as separates ( unless you are not sure a combined pill has no fish products in it).
You can have a vitamin and mineral supplement that has B12 and magnesium and other lovely things in it , but it is good to have the added lower/ middle dose D3 and Vitamin C on top.
Many vitamin complexes have vitamin K1 instead of K2 in them so if you need to be careful of clotting , you are better to get one with no vitamin K in it and get K2 separately, or one that states K2 .
I am sorry for your losses and understand your situation. I have boxes of my Mum's stuff in the house and a year on I am still finding it hard physically , as well as Mentally , to sort them.
My house is usually untidy , or higgledy-piggledy because my various health conditions won't allow me to do a lot of housework . I have accepted the odd cobweb and that I will never feature in Ideal Home. It's better than suffering from the pain and anxiety of trying to keep things up for show.
My husband does what he can in his holidays and at the weekend.
If you are a carer with your own health issues it may be worth looking into getting a cleaner via Social Care just to help you keep on top of jobs like washing up and washing, especially if you add to your Pain or Anxiety when you try to do the housework.
Never be afraid to ask for help , even if it takes time to get it , every bit of help you can get in your situation is worth grabbing with both hands and feet.
I know many people tell others to grieve the loss of a part of a family member or partner when they suffer from brain injuries or diseases. I'm sure that for some people this can be helpful , it wouldn't for me , so I have never suggested it.
I'm sure your husband loves you just the same as he always did and appreciates everything you do even if he can't express it . Take care , Bee
Hi, I understand. I try to be careful with mixing things up some, mum taught me this before life decided to give me its very own educational slap-in-the-face lessons we’ve all been treated to, 🙃. I’m taking a oil/liquid type of multi-vitamin-mineral-good health for health plant extracts which is also easily absorbed as being liposomal type, thing gives me some extra vit d3 and k2, but doesn’t go above the recommended amount of k2. Apparently d3 is water soluble so should be easier to rid yourself of any excess unused amounts. But d3 is supposed to help fibromyalgia in higher than normal doses according to me webnet searching -searching -searching, and it is definitely helping me. I have run out of b12 and am struggling energy wise without it. It’s hard to say exactly because taking them all together made such a difference, having had some bad dish days which before were just nasty very bad ones, but I am noticing my feet and other bits being bad now without the added b12?
I’m still getting the tingles which before we’re really nasty electric shock things, and the crushing feelings are more tolerable still, apart from the more ‘odd’ horrible crushing wherever it has a mind to erupt in……
I’ll keep on researching to see what I can find out, I had no idea vitamins could even play a part in easing pain/shocks/sensations of any kind, I’m fascinated by it all. Mins fybro is fascinating with all its strange stuff it does to me, and I have to admit I’ve found my hubbies journey since the brain injury and consequential brain surgery fascinating , as well as heartbreaking and pride of his fight to recover as much as he has done, so many emotions, but still fascinating which some might find ‘an incorrect response’ an opinion they’re free to hold, but not free to attempt to burden us with, sorry I’m going on a lot here.
(he was unprovokenly attacked by a really vicious b******, the just one running screaming flying thump kind of attack!)
I’ll post again soon.
I’ve not spoken with anyone this much about ‘my fybro and stuff’ before……😊
Just want to second all this! And add that vitamin B12 is better in the other 3 forms than the cheapest, normal form cyano-cobalamin, and high dose s.c. injections every few weeks or months really boost the levels, pills may not work well.
None of this normal stuff really help me, but I have to keep them up, otherwise the levels sink. (Got lots more supps that help, but it's tough - I am often around "75% Ache free", "85% local pain free", but have to do a lot every night and every day to get there, and still the fatigue is more...)
Yes , despite my nutrient rich diet and taking supplements the right way I've just tested as severely deficient in Vitamin B12 and Iron and have had my Intrinsic Factor tested this morning. So it is likely that my Ehlers Danlos is causing malabsorption as well as other gastric problems.
I had the usual argument with the inexperienced , but rather nature GP about needing my Vit D test done , as it will prove general malabsorption is going on even if I don't test positive for Pernicious Anaemia.
I have , if course , known that both EDS and Fibro can get worse and are linked to vitamin deficiencies and nutrient absorption problems for years which was why I was using supplements and a good diet to combat it.
The GP still tried to convince me that I should wait for tests and try supplements until the test results came back until I listed which nutrients I have taken for more than five years and the levels I take.
It's pretty awful when you have to quote from the B12 Deficiency NHS guidelines on care to get the injections you need straight away , as my tremors are much worse and slurred speech and lack of coordination is worse than it has ever been with my Dysautonomia condition.
I'm still going to have to waste 5 more nurse appointments to get them injected at the surgery instead of being allowed to do it myself . They said it's not allowed , which I know is nonsense , and In trained to give injections to other people. But you have to win one battle at a time.
The next one is to request the hardly ever offered iron and vitamin C injection.
I actually can't take the synthetic cyanocobalamin, it gives me a lupus style rash on the face and hands and very bad stomach pain . As an oral I used the combo of methyl cobalamin and hydroxocobalamin. I had to double check that the nurse had got the Hydroxocobalamin injection from the fridge as she had a choice of both .
I'd definitely suggest to anyone having the injections to have the Hydroxocobalamin in case you have intolerances , and to check the type of B12 in your supplements if you find you have stomach pain from taking vitamins , as the cyanocobalamin , as well as being inferior can cause more gastric pain and constipation.
Hydroxocobalamin rather than methylcobalamin and/or adenosylcobalamin? My last ones were 5mg methylcobalamin, they're used up, and my levels are dropping again. Last time I actually asked for 1mg of adenosylcobalamin, but they only had 5 mg methylcobalamin. For next time they compounding pharmacy suggested 1mg alternating. I'd've guessed they all might cause reactions. I didn't have any from methylcobalamin tho, and 5mg is a real bomb, it was enough to get them dug in only every 3-4 months (I started every 3 weeks, but didn't feel any different).
Hydroxocobalamin 1mg or Cyanocobalamin 1mg , alternate days for three weeks loading dose then every 2-3months maintenance dose for life, if Intrinsic Factor is positive , or, there are neuro symptoms and it is B12 deficiency anaemia that does not respond to supplements . This was the NHS protocol for treatment that I found and my GP uses.
I had the first Hydroxo jab yesterday , I actually feel more Fatigued and wobbly than I did before it but I know that it takes time to for the body to readjust and for improvement, especially when we have Fibro and other Chronic Illnesses to deal with too.
Our bodies always act with extra Fatigue and Pain when they are being forced to adapt to new medications .
No allergy reaction though .
The other two B12 variants are used by the NHS too but I think they prefer to try you on Hydroxo or Cyano first and then try the others , or alternate if you aren't improving .
Although how they plan to tell improvement , or if you have something else that needs testing , I have no idea , as , just like with Vitamin D deficiency , which I already have , they have it written in the rules that they don't need to retest the levels after the treatment starts. They just assume it will work which is ridiculous and causes delays in discovering if you need other tests.
The labs actually send my sample back for Vit D regularly as refuse to test because they think it's not necessary as they assume the supplements will work. When we do manage to get the test done I'm always still very low or deficient . Of course , despite asking if I do have malabsorption in my gut because if my health issues despite being negative for Coeliac ( which I know from my research can happen with EDS and Fibro ) they just shrug and want to see how it goes.
You are meant to take the cyanocobalamin supplement orally as well as the injections as a standard daily oral supplement, but that assumes , again that you will absorb it . I react to it so will continue my oral methylcobalamin supplement , but to be honest as it hadn't prevented me becoming deficient in 5 years along with a good diet I doubt it's going to make a difference from now on either.
I'm going to get a private full thyroid panel done because I'm sick and tired of them looking at one thing at a time , how on earth the expect to be able to treat people efficiently , and economically, by doing tests at different times that can affect each other is beyond me . It's like going to the window and trying to see the view but only open half the curtains.
Either B12 deficiency will be reducing how well my thyroid works or poor thyroid could be reducing my absorption of nutrients , that is just medically researched facts if Doctors actually looked it up. Test for both at once , treat accordingly seems like common sense to me.
It's certainly not saving them any money in the long run .
Hope your deficiency improves soon , are you also on the Pernicious Anaemia Society forum , they seem really friendly and knowledgeable over there.
Thanks Bee - actually I wouldn't really say I'm deficient, just at the lower end and using it to be on the safe side. The 5mg injections rocketed my levels (to 1700) but didn't make any difference, so nothing I'm focusing on. But hoping it'll do something for you.
Here in Germany we don't get supps paid for. Which is funny, because they're the only treatments I need to spend money on at the moment, and lots of it... 🧐🙄 But 10x 5mg methylcobalamin only cost 30€ and went a very long way, one of my cheapest supps.
It's copper I'm focusing on at the moment, an unusual one I came across on 1-2 MCAS pages, and was extremely low when I got it checked, so quickly switched from zinc, which I'm actually very high in.... Now I'm pausing and then re-checking both. Copper may be underrated since outsiders like Morley Robbins stress its help in getting iron to carry oxygen to the mitochondria, which sounds like a great help for my severe fatigue. Just taking the copper didn't seem to do much. But now analyzing in hindsight shows that stopping it correlates precisely to a drop in energy - but also with a longer trip to an allergist having overdone it .... 🧐
Yes, you do need to be careful with dosage when using supplements , especially if you don't suffer from deficiency from under absorption but rather from depletion of nutrients . You also need to check if you can use them with your prescribed medications. Many prescribed drugs can react or be reduced in efficiency if taken with certain foods or herbal supplements.
You can get multi vitamins or separate nutrients with enough of the trace minerals in them to top up the body in Fibro.
You can cause toxicity illnesses if you overload or inject large doses when you are only low.
It can take a long time to recover from toxic levels of nutrients with Fibro.
What are you currently taking ?
Have you had your thyroid levels checked ?
Of course Fibro on its own can cause Chronic Fatigue Syndrome but it can also be good to have your thyroid markers checked ( all 6 markers including antibodies not just TSH and Thyroxine like they do on the NHS). It's worth ruling out especially if you use nutrition to help your Fibro because thyroid problems can be caused by low B12 or they can cause lower absorption of nutrients.
I take Turmeric for my IBS , one capsule rather than the recommended 2 because that can cause more issues for sensitive stomachs , I actually find I notice the loss of the Turmeric if I run quicker than the prescribed medication.
It is actually a good way to tell if your nutrient supplements or herbal cures are making a difference to your health by temporarily stopping them .
Start on a low dose then go up to the required amount so your body doesn't react to it as even nutrients can give you mild discomfort until you body adapts to getting a new drug , even a supplement .
Take it for 6 weeks , then reduce the dose by half for a few days , then stop the supplement for a few more days to a week and note if you feel the same or any worse . The way supplements make a difference can appear negligible but as you say it's often when you aren't getting them you notice how they did improve your general health and pain.
Yep - I don't take any meds, don't tolerate most. But when I did I always checked interactions. Docs and pharmacists hardly ever know.
I prefer single supps to multi vitamins or multi anything, so I can adjust and no hidden intolerances show up.
Overdosed B12 doesn't get toxic, just gets eliminated. vit. C is the only other one I (need to) "overdose": 2x.5g - for MCAS I should actually be trebling that.
I'm currently taking:
ALA(-R) .2g, B2 4x50mg, B12 5mg/4m, C (as sodium ascorbate) 2x.5g, Carnitine 6x0.6g, D3 20.000 IE = 500mcg, + K2 (MK7) 200mcg 1(-3)/wk, EGCg 1x.5g, Ellagic Acid 3x.2g, Feverfew .4g (+.2g MSM), GABA: 5x.6g=3g, Ginkgo 3x168mg, Glutamine: 0.6+0.3g, Honokiol (2%)x2x.4g=16mg, Luteolin .2g, Ω3 1x5mg (microalgae), Mg Glycinate 2x50mg (net), Mg Malate 2x45mg (net), P5P (B6) 1x27mg, PEA 1x0.4g, Passiflora 4-5x.35g, pine bark 1x.5g, PQQ 1, CoQ10 (ubiquinone) 1x.1g, Quercetin 4x.5g, Resveratrol (50%) 2x.4g, Rhodiola 2x.35g, SAM-e .1g, Silymarin (80%) 1x.5g (+83mg L-cholin) , Theanine 2x.2g (+.15g polyphenols). GABA is my mainstay for "everything", very very helpful, and passiflora for sleep - without them I'm nothing, the dose is high but necessary. The less usual ones are more for MCAS. All carefully adjusted for meals or empty, mornings or evenings, and what to take with what best, and in high quality forms with only cellulose as additive/filler.
I get my thyroid levels checked every few months as there once seemed a suspicion of Hashimoto's, that's been pretty much excluded several times, but my doc's are keeping an eye on it.
I don't take any of the anti-inflammatory spices like turmeric/curcumin etc. due to my hyperacidity, also have to be careful with my amino acids and vit. C. (I encapsulate most of these myself - you too?) But prefer the 18 "less spicy" a-i supps I take.
Yeah, I sometimes get impatient that I'm not getting better. But when I then stop several or single supps I get worse, then better when I take them again.
I've actually hardly ever experienced my body adapting to any med or supp, except GABA + glutamine in the first week, which was pretty high dose for starters. Apart from that any mild discomfort always ended in severe side effects when dosing up.
Many supps I took according to protocols or similar that didn't help at all. Then quickly wanting to get off lipid meds, jaw inflammation and then MCAS I piled lots of appropriate supps on inside of a few weeks and was lucky they didn't harm, but most helped. Only one I had to take off again was NAC when the MCAS flared, but I'll be trying that again some time, too. I'm pretty sure about all the above.
What I never tolerated was 5-HTP, ashwagandha, L-taurine, L-tryptophan, melatonin (even 5mcg!), pectin, what I've decided against is ALC, arginine, B3, mumijo, NADH, ribose, serrapeptase, taken enough for the time being: copper(?), selenium, zinc.
That's really interesting , I have suspected MCAS ( basically I have it but there isn't a local doctor or consultant that knows , or is willing to learn enough about it to give me a written diagnosis) . I also have Chronic Dysautonomia , as part of S.N.R.T , a genetic / EDS linked tachycardia syndrome.
I read that Ashwagandha can flare symptoms in people with autonomic nerve dysfunction and MCAS intolerances or certain blood pressure issues.
I flare with any Triptans and actually , ironically , had seizures with Anti Convulsant medication given for the Nerve pain originally.
I didn't tolerate 5-HTP , Melatonin or NADH.
My cardiac medication to regulate the tachycardia by improving my vein strength actually made a big difference to my Fibro pain and reduced the amount of headaches I have. Interestingly, it has had some small trials for the use of pain management in Fibro. It's called Midodrine Hydrochloride , although the brand name version I found lasted longer without rebound side effects . The brand is Bramox.
I think that probably just proves the doctors and researchers need to start looking at the potential underlying cause for Fibromyalgia to eventually flare up. For many of us it has come from years of suffering with another illness , especially if that illness was not Diagnosed or ill managed.
When they find Fibro they need to dig further with comprehensive tests if other conditions or nutrient deficiencies that are commonly linked to Fibro.
Then if you get the medication and Self Care right for the other illness it is more than likely that the Fibro symptoms will reduce too.
It would also stop us all going through years of trial and error of trying medications that don't get to the route of where are pain comes from , or medications that flare our other problems making our Fibro flare up too.
As I got some stick the other day for "hijacking" by returning long posts in a 2 week old thread, I hope it's OK for mrspippy for us to use her thread like this...??`
Have you gone thru Molderings' MCAS questionnaire? (or another) humangenetics.uni-bonn.de/d... you otherwise get seizures? (GABA gets a grip on my focal seizures.)
Interesting about your Bramox. I can control my pulse with relaxation a bit, but mine is usually under 70, often around 60, so I can't complain there.
Yeah, the researchers are of course trying to look for causes, plenty of ideas around, I've collected about 10, but I feel they haven't even got an idea where to look and are trying superficial things - the CSS hypothesis along with coining "nociplastic pain" to me seems superficial, may fit for some, not for me. One thing that I think might help them is we could describe and they would then listen better. But essentially I think it's all on a deep level of something that science has only scratched the surface of (mitochondria, neurotransmitters, microbiome), so I don't reckon with much help soon. While we're waiting I'm diligently keeping my detailed blog and being my own human guinea pig, and enjoying that and the interaction with other guinea pigs...
Don't know if you've read much of the MCAS-touter/-"expert" Afrin, but he likes to explain all things from MCAS, his '17% of people may have MCAS' means everyone with fibro, long-Covid etc. essentially has MCAS.... I'm wary of that too. But by all means they can all pretend that to try to get more money to research it.
Perhaps one of us could pop up a post asking for peoples experience of Fibro and MCAS and their tips instead. It is a big topic , I'm sure there are other people whom would want to join the discussion , or have some tips.
I used to be able to use breathing alone for my heart rate change , but eventually the POTS symptoms were out of control no matter what Self Care I used .
My heart rate still jumps up between 30-50 beats in a minute into low tachycardia just from getting out of a chair to standing up but the dizziness and the constant fainting have really reduced on the medication. The tinnitus never stops!
Before both medications I have for S.N.R.T ( Sinus Node Reentrant Tachycardia) with orthostatic hypotension, my heart would be at 80+ BPM sitting with legs up , even sitting with legs down made it rise to 110+ BPM. Standing for a minute it shot up to 140+ BPM without moving a step. As Dysautonomia say in their slogan , Standing Is My Cardio!
It increased the Fibro pain hugely as well as giving me a constant intense migraine . Plus the constant fainting , near fainting , vertigo and loss of circulation on activity. Eventually it also made it hard to breath.
Whew, difficult! I checked myself for POTS a few weeks ago, confirmed safe, thank God.
Well since January I've been mentioning MCAS in almost all of my replies here and only a very few like you (I think only 1 other) are thinking along those lines. Also I joined the healthunlocked mastocytosis forum in Feb and I'm a lone ranger there. There's someone new there at the moment with quite a few newbie questions, and I'm absolutely the only one answering, and I only got one reply to my introduction post 5 months ago as well. "Inspire" is more helpful (pm?)
Very much like Dysautonomia , most people with Fibro don't know about MCAS , especially new sufferers, and won't have been checked for it or read up on the conditions yet , or realise that their own Fibro could be worse because of them.
I think that's why it is worth putting up posts asking about what people understand about POTS / Dysautonomia/ MCAS and Autonomic Dysfunction to help build up forum members awareness of these Fibro linked conditions , in case they are actually suffering with them themselves .
It would definitely help them to find the right Self Care techniques to improve these symptoms and reduce the Fibro Pain Flares.
Many people regularly ask about the non pain symptoms and how they affect them .
The most common include :
allergy reactions , extreme side effects to medication , dizziness , palpitations, excessive sweating , poor circulation, migraines , fainting , unexplained feelings of Anxiety , insomnia , gastric / bowel / bladder problems , pins and needles , poor circulation , Fatigue, brain fog and poor concentration.
These are all symptoms related to autonomic nerve dysfunction or can be early signs of , POTS, MCAS or Hypersensitive disorders.
Why don't you start putting up posts highlighting them I think it would help other members a great deal.
HiReading ur post is a mirror of myself. Such awful things we go thru with this. I take a pill for palpitations. Was on morphine for 6 years for pain came off it stopped working. I wish there was an answer. Where are u based ? How do u cope ? I do meditation, little bit of yoga. Suffer mostly but keep trying to be positive. I have just been told i have calcific tendonitis in my shoulder dr deciding whether to operate. It may make fibro worse and i cant tolerate pain relief. I have hours in the day when pain is so strong and i cant move at all. Tried everything over the years and body doesnt respond. Stay positive and be happy if you can.
Reading and seconding Blearyeyed reminded me that a friend of ours is now going to a "clinic for manual therapy" before making the decision about her similar shoulder, don't know if you can find any possibility like that?
How do you cope ? Where are you based ? I couldnt believe you are a copy of me with things wrong. I cant tolerate medication bad reactions. Just have to cope i suppose. Good and bad hours . It can switch at any moment.
Much like you I look for the silver linings in each day , no matter how small and I pace myself.Each new set of symptoms that arise I adapt my lifestyle and self care techniques too.
I avoid the triggers if I can or adapt the way I approach an activity to create the least pain if I can't avoid it.
I eat healthily, drinks lots of water and take supplements to try to keep my levels high enough to allow my body to have enough nutrients to heal and that helps reduce pain.
Although , I've now just be diagnosed with B12 deficiency anaemia and they are testing for Pernicious Anaemia despite these supplements.
I exercise gently daily to get the right balance of strengthening muscles and reducing pain.
Despite everything I keep positive and I try to get the best quality out of life as I can.
Have you made a decision about your shoulder operation?
It is a fine balance.
On the one side , if it is bad not having it could give you growing pain and coping with the shoulder issue could cause daily Fibro Flares.
On the other , as you say , if the operation is not effective it could also continue to give you Fibro pain.
You could ask for a second opinion on an operation or ask your original Consultant if there are any other alternatives to surgery that you could use first.
It's good to remind them of your Fibro and if you have a connective tissue problem like Ehlers Danlos remind them that it also requires special care and us slow to heal.
It might be an idea to ask the opinion of the Fibro group or a helpline to aid your choice.
And for reassurance , ask to be seen by a surgeon who is used to treating patients with Fibro and other nerve pain issues.
Hi JayCeon, it’s fine by me, anything that can help anybody I’m fine with.Can I just add that yesterday I don’t know if it was just a really bad day (that would have been such an extremely horrendous day without the help of my new found vitamins), and or just the extended really high heat we were having. I was in so much paint all of my joints hurting too, as I’ve discovered we say all but my fingernails in horrible pain, along with the electric shock and pins and needles….
Today isn’t so bad, very exhausted, very tingly everywhere, and instant sudden pains….
At least the heat has subsided, if that’s what was the cause. I love the heat overseas, but it’s usually not so humid, and often there is a breeze, and of cause the air conditioning and shutters so you can take a pause from it. Where I live here we are in a constant sun all day facing apartment/flat, with no windows at the back, just a hallway then other flats, so no flow through of air. So we were stuck inside with just some really good fans to contend with it all. I’d struggled to put up some thermal curtain linings to our curtains on huge windows, we’ve three such windows, but I only managed to do two of them, but thank goodness I did, otherwise, I’d have had to somehow try to find some money for the little premier inn behind us, to spend a couple of days in, if they had air con,and if not, at least they’re not in the sunshine, but in the shade of our building….. sorry just having a let off of steam
(We don’t have any money, we rent and it’s a cheaply converted listed type building, housing association market renters flat!)
I was in so much paint all of my joints hurting too, as I’ve discovered we say all but my fingernails in horrible painIf it didn't hurt so much hearing that, it'd be funny to imagine us in paint... 🙄 (it could be paint that expresses the pain, or just pretty colourful decoration...)
At least the heat has subsided, if that’s what was the cause.
So you may now find out...?
no windows at the back, just a hallway then other flats, so no flow through of air.
Would it be feasible for everyone to leave their front doors open? Question of trust?
I’d struggled to put up some thermal curtain linings to our curtains on huge windows,
I spose part of the problem in the UK is now having to get used to higher temperatures ... as well as more snow.... 🙄
find some money for the little premier inn behind us, to spend a couple of days in,
Would it praps've then have been cheaper & longer term to pay someone to put up the thermal curtains?
(We don’t have any money, we rent and it’s a cheaply converted listed type building,
Get you there 🙁, similar here (altho it's more normal to rent here; and ours is OK
Hi... go careful with the vit k2... as too much can raise your blood pressure... check the foods you eat to see if you're already having enough from your diet.. x
Hiya - any details on that? Wouldn't need more blood pressure! I haven't been able to find K2 increasing blood pressure anywhere though. A 2010 study just saying "vitamin K" and a 2012 case study on pubmed saying vitamin K2 decreased blood pressure. A detailed overview from 2022 on pubmed not mentioning blood pressure.
As to foods: K2 is in animal and fermented foods, both of which I personally hardly eat.
That's good... can't recall which site I was reading about it on now.... apart from others that say too much may cause blood clots as it can thicken the blood and don't take if you're taking blood thinners. ???
Vitamin K1 can definitely cause a risk of blood clots , and can cause blood pressure problems for hypertensive people. You can't take this with blood thinners , or garlic either and certain other foods.
Vitamin K2 is recommended for nerve health , brain health and metabolism and doesn't cause the clot problems . Most of us a low generally in K2 because it is hard to get in food but we do get low in it , unlike healthy people , because we are always dealing with healing and our sluggish symptoms.
K2 is recommended by lots of different forums and naturopaths for a wide variety of joint and pain conditions as producing a positive change in symptoms especially when combined with Vitamin D and magnesium. There are some good studies on that .
It may be possible that you can't take K2 with blood thinners or certain other drugs but , youdo always need to check that any supplement you take doesn't interact with your other medications though , even the common multi vitamins and garlic.
As long as you only take the recommended amount if you can take any supplement you are safe , as long as you have checked you don't have any side effects or intolerance to it which you generally feel straight away when you try it.
It's always good to start on the lowest dose to do a tolerance test and work up with supplements as well as making sure you take it straight after the right type of food ( or only with water if that is the requirement) This helps you absorb the most from the supplement as it is digested with your food instead of basically creating very expensive wee!
Sorry to hear you are suffering from so much loss and for all you must have suffered from your narcissistic sister mrspippy. The treatment you are having with the vitamins is interesting though.
I hope my post didn't trigger you too much. Love Elaine xx
Hi Mrs Pippy, I haven't read through everyone's responses in full on here but have a couple of comments, apologies for repetition: 1) you "have an acute allergy to all fish and seafood, anaphylactic allergy levels"; does this include algae? I use a vegan omega 3 that is produced from algae, it also has a little Vit E in it. I think it's a great product, we've been buying it for a few years now. PM for more details if you like.
I have been using a spray form of D3 with K2 however, having just read the ingredients list I shopped for an alternative. I wasn't able to find a product that contained both, in a ratio that I think (from what I have read) is appropriate, without unnecessary ingredients. As I think someone else said, fat soluble vits need to be delivered in a fat of some kind and D3 should be taken with K2. I found D3 ( vegetarian) and K2 MK-7 (vegan, which is my preferred form) delivered individually, in a simple oil base. Great value and you can adjust the ratio between them if advised to use them in a specific way or use less of K2 if your research suggests that is right for you.
Again, if you want the details of the supplements I like, I am happy to share- I have no links to these products by the way, just an enthusiastic, happy customer
Hi Sue and thank you for your reply. I’m taking a combined vit d3 and k2, I think the k2 is 25 ui?ue? equivalent to 25 mcg/mg I believe, it isn’t the full recommended whatever they cal it, hee hee, I can’t remember due to brain foggybogdown just now. I’ve just done some research and found an omega 3 derived from Echium, however it has a capsule made from caragalgeen (? Red seaweed ?), so I’m still looking. The liposomal vitamins/minerals/supplements are nano sized partials suspended/protected by specific oils so they can be better and more easily absorbed before they hit your stomach. A bit like some meds you put under your tongue. I take theses and most days hold them in my mouth for about 30 seconds sometimes more/less and sometimes just swallow them, but, I don’t drink or eat anything for at least 15 minutes after, the last bit my own idea just to try to help even more with absorption, even though you mostly can add the drops or liquid to water or pour over foods (cold not hot!)I’m very glad to have found out about the omega 3 and I’m definitely going to find some.
Incidentally Black seed oil is apparently good for some people, not sure about us fibromyalgia types yet though, still looking into this. But the omegas are supposed to help with cholesterol and high blood pressure, and black seed oil may help with weight loss too???😉
Hi again, sorry. I should have replied that I’m highly allergic to all fresh water and sea water fish all seafood but especially lobster and mussels that I know of! As a child I’d swim in theses here in the U.K. on holiday and my exezema would often flare up if I didn’t quickly shower off afterwards, it never stopped me though because I used to love swimming. So I’d really rather avoid algae/seaweed forms of omega 3 just to be safe. I’ve just found a seed based form, but it’s capsule is made from an extract of red seaweed, calageneen ? . So I’m going to keep looking. Canola oil is a possible though.Gentle hugs for now. 🙂
I also use vegan Ω3 from microalgae, not cheap though, ey? For a time I thought why not just olive and canola oil, but then again read that's probably nothing like enough. Lost my enthusiasm for canola oil since realizing it's actually a new product, we wouldn't really be able to eat the original rapeseed it was bred from in the 70s in Canada (Can-Oil), as it's too bitter and harms... But I still use it for my tons of raw veggies, now just mixed more with olive oil.
Good point being able to adjust the ratio of D3 and K2-MK7. That's the reason that almost everything else I take is not in any way "multi", and I've often had to adjust the doses and times I take them. Means I take about 30 supps = 55 capsules per day.... O.o But I've found a good vegan D3/K2 product and am hoping that I can take that risk for once ....
I once read about black seed oil and bought a very expensive bottle, organic. Luckily beforehand I had a look at side effects - with a very hyperacidic stomach I need to avoid it. I was able to return it in the shop, luckily.
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dealing with pain and grief
Carry on regardless. 
newly diagnosed and very confused!
Help …!! Exhausted 
Family wedding
