Fatigue

[Boo7]

Hi all I feel so exhausted all the time any tips for me please x

[Hazel_Angelstar Administrator FMA UK Staff]

Pacing activities and tasks can help to manage fatigue levels, at least some of the time

I rest as much as I can, and prioritise tasks so that I'm only doing essential stuff on the worst days xxx

[Dizzytwo Moderator]

Hi, pleased to welcome you to our group 😊

I see you've left your post unlocked to this community only for privacy reasons you may want to lock it. Also locked posts tend to get more replies.

If you would like to lock your post this link will show you how xx

healthunlocked.com/fibromya...

Momo

[Kitten-whiskers]

Hello Boo7, I would say have you done a detox? That helped me tremendously, much more that I could have expected. I hope you feel better soon

[Pedrochelli]

Try taking ashwaganda and magnesium. Also try to get some dopamine however you can. This is very difficult when fatigued and in pain... I know. I have been on strong pain killers (nsaids) for over 2 decades for psoriatic arthritis and then was given methotrexate and steroids to add to them. These led to 2 cancers and then temporary right side paralysis and lots of side effects. I was wrongly given more steroids after this leading to severe panic attacks without panicking (the thalamus and amygdala bypass the cortex so there is no conscious thought)and eventually I had 3 decades of drugs stopped in one go and told by doctors it was all in my head. This lead to high levels of ATP and an opioid addiction with no working adrenals. Only 1 kidney, no prostate after the 2 cancers and plaques in the brain after crescendo tia's. Many drugs cross the blood brain barrier, damage the gastro intestinal tract , kill microbiome, damage the liver and kidneys and damage the mitochondria in the cells in the blood stream causing another immune response. These are then killed by natural killer cells. Stopping a decade of steroids in 1 go is extremly dangerous and left me bed ridden and dementing and bent over in a mob scooter with severe nerve damage. I had been riding fast motor bikes and working long hours as an engineer less than 10 years before this.. logic told me the drugs don't work as i was told I needed morphine for my upper back pain to add to the 8 opioids, gabapentin, codeine, amitriptyline, paracetamol etc and unable to stand up when they wore off. I have weaned myself off every drug I was given and have wrote to American professors for help. I have downloaded lectures to see how the meds work and I now know about the pain pathway through the central nervous system to the brain and axons,neuro transmitters and pre and post synopses. The pain gets worse... not better with more nsaids but the brain is blocked from feeling it. I now take vitamin b12 too because the pain killers caused heart burn which meant I took ant acid tablets for decades. These also cause problems and alter the stomach acid preventin vit b12 being absorbed. There is no free lunch with meds. I still have pain because long term constant steroids cause diabetes , blurred vision, osteoporosis and nerve damage. All this was dismissed by doctors. Prof Terry wahls ended up reclining in a mob scooter like myself and she weaned off her drugs too. I now blend beetroot to add nitric oxide to my diet , gave no sugar in my diet and have removed negative people from my life. High levels of ATP after being forced to stop steroids causes extreme inflammation in the body and brain. My doctors seemed unaware that you can't stop decades of meds in one go. Prof Ian carrol and many others are on line showing that the drug companies damage the brain and nervous system of patients and then the doctors say they are physcotic because they stay indoors taking opioids in the middle of the night. Then when the patient suffers head pain, triggered nerve pain and severe ptsd and without meds they are confused. I have studied bio chemistry now for 2 years after struggling to stand up or even read with such severe brain fog a few years ago. I now struggle with other senses like sound as these are related to the role of the thalamus in the brain. The amygdala stores memory which is responsible for ptsd and there are periforrall nerves somatic nerves and there is also the autonomic nervous system linked to the vagus nerve. This affects balance and many other things. Dementia is on the rise and so is the over use of doctors meds. Iatrogenic disease means harm by healer (latin) and is always in the top 10 causes of death recorded by the world health organisation. If you have a good doctor they may work with you as herbal treatment can also be dangerous especially if mixed with meds. My doc just thinks consultants don't make mistakes even though I am medication free for the 1st time since 1989. I have listened carefully to Prof Steven fink lectures on line explaining cushings syndrome and the nervous system. It seems that docs call all pain they dont understand fibro. I had massive swollen legs which was water retention and was covered in psoriasis but not now and on no meds.Take care and maybe vit b12, magnesium and ashwaganda may help but check if you are taking other meds. Remember docs will only promote pharmaceutical drugs. I read about these in books by professors but i have researched too.Good luck on your journey.

[Aoibheann in reply to Pedrochelli]

Well done ✔ I am impressed even though the majority of your post goes over the top of my head. I will definitely try the supplements you mentioned. Stay well stay safe. X 🌞

[JayCeon in reply to Aoibheann]

A few tips as you're thinking of taking herbs/supps like Pedrochelli mentioned, like ashwagandha and magnesium, and dopamine.Ashwagandha is said to be good for many things, but is a nightshade so careful: If you have an oversensitive stomach (hyperacidic) and gut (IBS) like me then keep the dose very low (e.g. open the capsules). (I had to stop it after 2 days.)

Similarly magnesium - look up the different sorts first, they work a bit differently: Magnesium malate or (bis)glycinate are good if you have GI issues. (I take both now.)

If you're interested in trying something like dopamine, I'd recommend Trudy Scott's blog on.

(GABA helps me enormously for 10 things, esp. stiffness, and a bit for energy, so apparently I have low serotonin, but I also seem to need glutamine for the dopamine, altho my sleep lab doc recommended the med levodopa, which didn't help first time around, but I'll be trying again in a - too - low dose, as that seemed to help sleep.)

(My fatigue/ache is often a result of bad sleep, that's what I'm mainly working on now GABA is doing its stuff in the daytime).

[Aoibheann in reply to JayCeon]

Hi, thank you for all your tips. I have started on the magnesium, ashwaganda and B12. To early to see any improvement. GABA - don't understand, please advise. You take good care now. 👍

[JayCeon in reply to Aoibheann]

GABA is a supp and a body neurotransmitter, the amino acid "Gamma-AminoButyric Acid, which is responsible for serotonin. It had long been thought not to be able to pass the blood brain barrier (BBB), so I didn't take it seriously, but not having any better ideas anymore I tried it and it has helped me much more, and immediately, than any other single substance I've tried. Recent research now agrees that I'm not crazy, at least not as regards GABA, but they can't explain it apart from it apparently smuggles its way in despite being much too big. If you're interested have a look the resource I find best is Trudy Scott's antianxiety blog, e.g. as a starting point the amino acid questionnaire there. Two fibromites I know didn't look at the blog first (don't understand English...) - one of them has good results with a much smaller dose than I need, the other had problems, so I copied her some stuff and she saw she needs to take tyrosine instead, and that helps her a lot too. (Sorry for the info overload...)

[Aoibheann in reply to JayCeon]

Hi JayCeon, you’re a wealth of knowledge! Do you get GABA through your Doctor? I live in the north of Ireland. Thanks 🙏😊

[JayCeon in reply to Aoibheann]

Oh, you do want even more? No, it's OTC. People say make sure your supps come from reputable sources. Here in Germany I get them from online "Apotheken" (pharmacists). You can get the (German) brand I got there first (Warnke, 750mg) from amazon, now . However after success with these I read (Trudy Scott) to take it sublingually starting with 125mg and increasing till the turning point where the symptoms come again. That's what I recommended to my colleague, who stopped/went back to 300mg. Talking to my sleep lab doc about it (very happy with me taking it successfully) he suggested taking it as needed a few times a night. So I opened the capsules and took less. Opening them was a GI (hyperacidity & perhaps IBS) problem tho, and taking less reduced the help I was getting. So I now get big tubs of powder (Sinaplasan, amazon, own website, in Ge & En) and bought empty capsules (vegan, HPMC) and am now filling them up with increasingly more GABA. Tonight 3x600mg=1800mg, max. is supposedly 2000mg, with the result of 2h stints of deep sleep, no dozing. Bit fiddly at first, esp. at night, but I'm getting so fast that I don't want to buy a capsule machine (yet). The capsules take part of the brunt of the ("slight") acidity, plus I take herbs etc. for that too (Gastritol, Gastricumeel, S. boulardii, psyllium & linseed oil, but not too much). Trying to recreate my original success again I've added glutamine again, also now as powder, and up to 600mg and more. So increasing beyond 1000mg has deepened sleep, and above 1400mg is bringing my pain before peeing down to 0-1. I'm not sure whether it might habituate (thought I read it somewhere), but Trudy Scott sez it's about stimulating and being able to take less after 6 months or so.

[Aoibheann in reply to JayCeon]

Hi again! I'll give this GABA a try. Oh! And I have a niece married to a man from Germany. 💚💛

[JayCeon in reply to Aoibheann]

But start carefully, will you? Sfx are quickly reversible tho and the possible benefits far outweigh possible sfx. Keep us posted! Did you do the test or are you just gonna take the plunge...? Ah - just like me wife... - only she's German too.... But to confuse matters my sister's English - not Irish - (and German...)... Hadn't heard there's a sort of German ambassador in England - Henning Wehn - before this week...

[Aoibheann in reply to JayCeon]

Hello - I'm going to take the plunge, Apotheken. What would the possible side effects be? All the best.

[JayCeon in reply to Aoibheann]

The sfx I had (however in combination with glutamic acid, which I think was the culprit), but only for a week, were 3-4 vivid / drama dreams, dry mouth 2 nights, prickly lips & face for 5’ minutes the first 1-2x, tingly-fluey feeling all over, esp. inside mouth the first 1-2x, nose clotting a bit 3x, nose bleed 1.5x, fluey-ill-feverish at night 3x.

The sfx my acupressurist had were increased pain and worse sleep even in low dose, quickly reversed when she stopped it, to take tyrosine instead which she is now happy with.

The sfx my colleague had were a bit more pain when she went up to 400mg, but good again when she went down to 300mg and is very happy with that.

Trudy Scott says just watch out mainly for the fx you are trying to improve. Start at 125mg and as long as they stay or get better, take more from day to day, as soon as they get worse take less.

BTW I've added theanine, which is improving sleep intensity and breaks even more, and decreased GABA from 1800mg to 1200mg again for a time, I'll probably go up again tho, glutamine is at 600mg. But GABA is still the mainstay of all supps.

Best of luck!

[Aoibheann in reply to JayCeon]

Thanks JayCeon.

[JayCeon in reply to Aoibheann]

OK, I went a bit wild last night and took 1200mg GABA at 10pm and then another 300mg at 1am (more by mistake: I'd planned it for about 3am). Result was feeling pretty wide awake by 4, a dull headache then and in the afternoon (tired!), higher blood pressure, higher pulse & feeling cold. That's called serotonin syndrome, which you have to watch out for, esp. as regards drug interactions, i.e. any other meds, herbs, supps & foods which increase serotonin. It's nothing serious, esp. considering my energy etc. is still there, but my wife sez I look terrible ;-). Now I know it's too much, at least to take so closely together. I'd been up to 1800 before, but the 2nd dose later in the night and maybe with similar results, at least I've had this feeling cold incl. clotted nose (despite 20°C) quite a few times.... so now I know for sure what 'much too much' can feel like... Gone down to 900mg+0 tonight and will work my way up again.

Got it yet?

[Aoibheann in reply to JayCeon]

Hasn't arrived as yet. Take it easy. 🙏

[Dizzytwo Moderator in reply to JayCeon]

Hi, I had to edit your reply as it go's against our advertising rules which reads.8. Do not solicit members to other websites or forums for your own purposes, either through posts or private messages. You may discuss your blog or vlog only if it is related to Fibromyalgia as a helpful resource but you must NOT post a link.You can however invite members to private message you for the further information.

[Cotswolds25121 in reply to Dizzytwo]

Hi Dizzy, I just wondered with regard to advertising rules does that include mentioning a well known rainforest or companies that you can buy through that? I only ask as I wasn’t aware of this and recently did send a post that involved this. I hope I didn’t 😫

[Dizzytwo Moderator in reply to Cotswolds25121]

Hi there, sorry I have not seen the post or links you mention. The admin team will always check links when they see them. Unfortunately if the links go against the forum rules they will be removed. Also if links have advertisements attached to them they would be looked at in the same way. Unless they were fibro related.

Momo

[Cotswolds25121 in reply to Dizzytwo]

Mono🤔

[Cotswolds25121 in reply to Cotswolds25121]

Momo 🙄

[Dizzytwo Moderator in reply to Cotswolds25121]

Sorry this may make more sense lol I'm having a Mo moment 🙄

Promotion of commercial products & services is not allowed. You may refer to a product or commercial service by name as a useful resource but you must NOT post a link. You can invite people to use the message system to obtain the information from you if needed. Repeated posts about the same product may be considered promotion and could lead to posts being deleted or your account being restricted. Posting about helpful, supportive or informative resources that are freely available IS allowed and links can be given

[JayCeon in reply to Dizzytwo]

Whoopsy, embarrassing, sorry. I use it mainly as a reference site, so thought of it as that, but it's true: it is a sort of personal blog, and with a bit of forum character etc., so not really "just" a reference site. That's why I support the link being removed. However not from the rule wording: I don't see how this was for my "own purpose"? It is someone I have no connections with...??

I have mentioned my own (JayCS's) fibro blog and reference lists elsewhere, which some think are helpful fibro resources, but never with a link, so apparently that's OK...(?)

[Dizzytwo Moderator in reply to JayCeon]

Hi, definitely ok to mention your blog etc. Just not allowed to link to it. The wording I guess was for general use. I didn't write the rule. Thank you for your understanding in this matter I hope you enjoy the rest of your evening xx

Momo

[PVK1954]

Hi Boo7 Just accept you are going to be exhausted most if not all of the time but there are things you still want to do. Do these things and then reward yourself with a rest and the satisfied feeling your fibromyalgia is not the boss of you!

[Cotswolds25121 in reply to PVK1954]

Also, sorry hello, you can get b12 injections from your dr, I have had them for the past couple of years and the first two worked although I felt it wearing off just at the end of the 2nd month. The last two I’ve had have had no effect whatsoever and I am exhausted mind and body but I recently learned from here on the forum that you don’t only have to have them every three months as I was told, you can have them with shorter spaces in between plus also a higher dose than you may have been given so I shall definitely be speaking to my gp about this. Good luck. I too Dizzy am having momo today, so I hope this makes sense as I’m too exhausted to check what I have written

[CARTERKC]

Try vitamin B12 it is good for fatigue plus it helps with the central nervous system (anxiety etc) hope it helps

[AnitaK]

Check B 12 levels

[AnitaK]

Yes . Having a lovely severe groin pain day up since 4am .so not with it .Oh the joys of fibro

[Adlon57]

I feel so exhausted every morning, legs are sore whole body more tired than when I went to bed, I live on my own, have diabetes 2, JME epilepsy [plenty of brain injury from over 400 seizures, from 50 years with the condition] I do eat a sensible diet plenty of fruit and fibre, have an eight hour sleep 🥴 every night, but EVERY morning I immediately want more sleep, pure fatigue!🥱At night it almost is an incentive for not getting to sleep knowing the fatigued condition I will feel like EVERY morning!🥴