I have a girlfriend who is 26 with fibro and she is really struggling with her energy levels how can I help
Help with partner who has fybro - Fibromyalgia Acti...
Help with partner who has fybro
Written by
Architect77
To view profiles and participate in discussions please or .
37 Replies
•
D-ribose, Coenzyme Q10, fish oil and other supplements help with energy levels
verywellhealth.com/low-ener...
this website by Dr Teiltelbaum provides a free self-application with a list of recommended supplements
Thanks for the link, Jose, hadn't seen it before, but have used some Teitelbaum SHINE protocol lists (now hard to find, but saved). As energy has become my primary problem I'm interested in your and any ideas on it.
Just tried the Jacob Teitelbaum questionnaire and looked over my results and the list of supplements (complete with mainly combination products and shop links, shipped from the US....). I think it's quite OK for newbies who can't spend much time, money & energy on supps etc. So up to this point this reply of mine may be relevant for OP/you, Architect77.
Now it starts going into detail, for JoseT, hope that's OK for you Architecture77, if you're still there:
Much shorter and easier than his many pages long list of 100s of supps. But I prefer those and do base quite a bit of my "knowledge" on them. I must say neither the questions nor the answers fitted well to my energy problems tho. As I've done all this and much much more with not much help for my energy. I looked at the products, but was not at all enthusiastic - nothing new, typical advantages and disadvantages of combination products.
Same goes for D-ribose (just sometimes a small sugary push, but also GI problems and the sugar problem), CoQ10 (even tried hyperdosing, made no difference), microalgae, carnitine, magnesium (malate/glycinate) mentioned on verywellhealth. I do agree that praps ATP seems the logical place to look for clues or solutions for the energy problem. I had my levels checked before and after exertion, and guess what - they were less.... but that doesn't help me find out what's wrong...
The one that's caught my attention was on verywellhealth B3, as I broke off trying that due to too much of the typical skin flushing. I could praps also use it for my lipids - if I can take it.
what about vitamin D and B12 ? I forgot about those but any fibro needs a high level of them
I agree. One of the first issues my GPs looked at, pre-diagnosis, were slightly low, so I've been taking them for years, D3+K2-MK7 20.000 IU 1x/wk, also tried 3x/wk, and B12 as methylcobalamin 5mg s.c. Levels rocketed, but no help. (I take 30 high quality optimized supps, 14 of them for fatigue/energy...., tried more.) Just saying that these "can" help, but no guarantees. Been trying Chinese acupuncture since Feb, moderate success, and difficult to balance the cortisol it increases, but no other options left.
you can use the niacinamide type of B3 as it does not cause flushing, (NMN), also I find the MitoQ version of coenzyme Q10 works along with GenF 20 + with Alpha GPC first thing in the morning before food works well for me, I also take Acetyl- L -Carnitine, which helps convert fat into energy, alpha lipoic acid, thiamin Hcl and benfotiamine, n-acetyl-cystein, and a few other supplements magnesium glycinate and so on, however diet plays a large part in energy levels, cutting out sugar , carbs, gluten and chemicals in food, makes a huge difference, accompanied by regular light exercise, and breathing oxygen in a hyperbaric chamber regularly, seeing a Chinese Doctor,who understands the problems and can help with herbs and accupuncture. I have a whole list of notes for a talk on dealing with fibro naturally if you would like to read them let me know.
have you tried Palmitoylethanolamide ? I heard it is wonderful but didnt try myself
I've been taking PEA for quite a few months now, but according to my notes it's not for energy, it's for pain, inflammation, antioxidant and IBS, as well as CVD. (36€/month, my most expensive supp...) Haven't noticed an improvement, but lipids, blood pressure and vessels is reason enough for me, and they're fairly well under control.
reducing the inflammation is so critical for this syndrome... so i think it is a pretty good supplement
by the way PEA has been shown to relieve depression in 60% of patients, so i must give it a try
PEA lessens anxiety-like behavior modulating monoamines in the amygdala. PEA limits systemic and central immune response induced by high-fat diet feeding. PEA blunts high-fat diet-induced astrogliosis, microgliosis and mastocytosis.
yes, tried it, did not make any difference to me, however everyone is different, so it would be worth a try. in regard to O2 the difference is that under pressure you get more oxygenation, I found it really helped both the brain fog and fatigue, after many sessions, but not the pain, there are studies on it. For pain, there is no question in my mind that making sure your spine in in alignment causes much of the pain to lessen , the other for me is to stay away from all sugar and carbs and to avoid any inflammatory foods, I take a lot of supplements, some of them help pain, some help fatigue and fog and some for cognitive ability, I eat a lot of raw veg and cooked veg and some protein, and my life is almost normal, and I have a plenty of energy
so great to this Chrisbel and makes me to have so much hope. I am really considering to have my own O2 therapy at home. What i find hard to deal is with the stiffness in the body... i dont know if i should lay in bed, sit or stand... i get anxious all the time because i dont know what can hurt me. Any advice regarding that? ... also, how do you deal with insomnia ? For me it is the hardest part. I know JayCeon takes cold showers and seems to help...
Ok, I joined one of the 60 odd M.S charities around. the UK, and use their Hyperbaric Chamber, so there is probably one near you, I did 80 1 hour sessions at twice normal atmospheric pressure to begin with, and now go once a week, I found that after about 15 sessions, I started to really feel a benefit. in regard to stiffness, I find that there are two major aspects the first is definitely diet, eat and drink the wrong stuff and it makes everything worse, pain, stiffness, brian fog and fatigue. second exercise, I find that going to the gym for an hour every 2 days works for me, 15 mins fast walking, 15 mins cross trainer (no resistance) then 30 mins on matt doing pilates based stretches and a bit of abdominal work is all I do and I worked up very slowly to the level I am at, and the days when I don’t go to the gym, a 20 to 40 minute walk is good. like you the worst for me is night time sleeping is really the most difficult part of all this, so what works best for me is eat lightly for evening meal, ( non inflammatory foods) supplements an hour before bed, curcumin, magnesium glycinate, B complex, ashwaganda, , I have a latex mattress topper, and a pillow of the right height (sissel) cool dark bedroom, and the better my diet the better I sleep, It’s all about not stressing your body or mind, and I find that most people don’t understand the effect that the wrong foods have on their system, so also I am 73 and have as much energy as all my younger friends.
do you think is there difference between normal O2 and the hyperbaric? It seems O2 is more for the brain fog. I would like to take O2 regularly. For me the main difference in pain was because of going to chiropractic or not
Acupressure was praps my "chiropractic" - helped and still helps self-applied for local pains, every successfully too, but not the overall Ache from overdoing it. I did a few months of oxygen/ozone injections, did nothing. The doc thought at the end nothing in this directions would help me if that didn't. Haven't got HBOT near me though.
Hi Chrisbel, thanks for chipping in.
The type name of B3 is difficult for me in Germany, because the designations used are different, very annoying. I got a "Niacin" product from KAL, which seems to be niacinamide, but with a Germanized label. But maybe I should try to get something which actually says "flush-free", but hard here.
MitoQ is one brand name of ubiquinol. Tried that for a few months, no difference, and it's got less evidence for lipids than ubiquinone, so switched back.
GenF 20 = HGH, something that doesn't seem right for me.
Alpha GPC doesn't nec. seem wrong, just isn't recommended often.
Already doing or tried everything else you've mentioned here and I think also on your list (easily accessible on your profile as well as regularly in posts) constantly or at least several times several months. L-carnitine is better than ALC for physical rather than mental fatigue btw, so I switched back to it. (Taking both at the same time doesn't work, studies say.)
Of course it's hard for me having tried at least as many treatments as you, far beyond 100, and you say it's helping you and I say some's helped everything but none the fatigue. I am willing to try a "200th" and "201st", but the probability that I've overlooked something applicable is dwindling....
On the other hand amino acids help me more than anything else, which is apparently something you haven't tried?
Genf20+ plus alpha gpc encourages your body to produce hgh and testosterone, but I find it the most energy producing supplement I have found, plus it helps with cognitive abilities and muscle loss, it has many amino acids
ingredients
Ah, thanks, I'd just only looked at GenF20 just now.
Here the essential difference plus problem compared with a blanket combination product like this is that I've carefully engineered my need for GABA (5x600mg, glutamine 1.5x600mg and theanine), whilst I know I don't need tyrosine and I have glycine (if that's what they mean by mis-spelt "glysine") more than enough in my magnesium glycinate. Don't know if you know but glycine can relax or hype people, accordingly I've realized the magnesium glycinate hypers me, so I need to take it in the mornings. So it'd be very risky meddling further with any combinations. But I could adjust the other amounts accordingly.
Also it says you take it 1h before lunch and dinner: Do you? My stomach tolerates amino acids in my amounts better with lunch and dinner, whilst I'd have a few problems with other supps best taken empty - but that'd be well worth the risk and these amounts of GABA are much less than mine, the rest I could take with the meals.
Also, I usually avoid enteric coated, just use HPMC capsules, whether self-encapsulated, and avoid fillers, esp. since MCAS, so that's a lot I might not tolerate that well or might cause other problems....
But if you're really sure I think I may try it. (What do you think the chances are? - how many people don't benefit from it? do you know of any side effects other than the above?)
wow quite a lot of good info. What about ribose? It seems it is not in your list even though fibro warriors take it quite often. you dont recommend it ? thank you
I take D ribose every day, however I take a lot of other supplements as well on top of the ones we have discussed so I have not mentioned them all, just the ones that were relevant to the aspects we were talking about, for instance I started to develop pain and swelling in my hands 11 years ago and, after taking Large doses of hyaluronic acid every day for 4 months the pain subsided as did the swelling and now have been taking it for 11 years and have not had a repeat of the arthritic pain. In regard to how I take supplements, every morning when I wake up I spray under my tongue the alpha gpc and take the two tablets , then half an hour later I have my nutribullit mix of organic raw vegetables and powders, along with my other supplements, my reasoning being that the mix is so nutritionally dense, that the body absorbs the supplements as part of the whole food and does not react or get upset stomach. As to the GenF 20+ I spoke to the holistic nutritionist at the company, and she advised me as she takes it herself. I can give you her name and number if you would like as she sells it at a discount to me sometimes.
I've now realized I can get 2 flush-free B3 products via online pharmacies here, one in HPMC-capsules with only few fillers. Trying only 80mg of my previous tablets before a meal again I got severe belly ache. Not sure flush-free will solve that, but I think I'll try. Good if you tolerate your supps with nutribullet.
So you don't spread your supps over the whole day & night or divide up before & with meals, if I understand you right. Hmm, can't see that working, as mine have to be - labels, recommendations & experience.
Found a source for alpha GPC 2,33€/d, GenF20+ about that too. So my supp costs per month would rocket from 300€+ to 450€+ if I started them together. O.o Hope that's worth it....
as I said I get mine direct and it’s a bit cheaper, can give you the details if you would like, and as to whether it will work for you, only trying it will tell, I guess. It certainly has worked for me for the last 3 years and I will be continuing to take it for the rest of my days, along with a few other supplements that all together have made my life bearable.
as I said I get mine direct and it’s a bit cheaper, can give you the details
I can only find the possibility of getting it directly from the website for 70$, unless I'd take more than one. If you know a directer, cheaper way for a first-timer, I'd be glad if you could pm me... 
But I spose I'm still trying to get my head around it. If sites like healthline say don't use it, and the side effects of jabs of it (lipids, fatigue, muscle & joint pain) and of the amino acid cocktail contained (GI) are anything to go by, I won't have much fun trying it.
I don't know how your body reacts, but mine is extremely sensitive (due praps to my MCAS). Also: How do you react to stuff like 5-HTP, tryptophan, ashwagandha, melatonin and CBD?: I react with severe fatigue & zombification in tiniest amounts, without it helping my sleep at all. If you're different, then I'm guessing your type of fatigue is not mine...
healthline.com/health/hgh-s...
Same goes for alpha GPC come to think of it. Looking up the side effects: stimulation, heartburn & skin problems sound very rare, but it'd be typical for me to react: If it is stimulant, then I need to watch out - since for instance taurine, theanine and magnesium glycinate (so probably also glycine) keep me awake at night, even tho they can send others to sleep, and taurine makes me jittery in the daytime, while I can take the other 2 in the mornings.
OK Chrisbel - I've been doing B3 flush-free and alpha GPC for a few days now, like you recommended. How long till it helped you?
Do you now anything about dosage and effect of this form of B3? So far I'm going by the label. This anecdotal article from 2006 says without flush it may be useless, do you know different?: pubmed.ncbi.nlm.nih.gov/164... And this one from 2012 quotes that and similarly an earlier one ncbi.nlm.nih.gov/pmc/articl...
"Inositol hexanicotinate is commonly referred to as no-flush niacin or flush-free niacin, but this dietary supplement has not been shown to have any beneficial effects on lipid parameters."
Didn't think of that, altho it's the same with ubiquinol vs. ubiquinone: Ubiquinol may have been proven "more bioavailable", but hasn't yet to really work.... One reason why I've gone back to ubiquinone.
And I've just seen an offer for GPC without "alpha" - do you know anything about that form?
Thanks!
every individual person is going to have varying results according to their physiology and form of manifestation of the syndrome, so all I can say is what I do and how it has affected me, and, as with everything I take, somewhere there is an article by someone saying that there is no empirical evidence that it works, so I give each supplement that I try at least 6 months before deciding whether it has a beneficial effect. some seem to make a difference sooner than others. Also I do not look for the ‘magic bullet’ one product to do everything, but rather try to group what I consider to be symbiotic products together to have an overall effect, so I am not just using B3, and alpha gpc, I am also taking other supplements that I think help in the same area, and overall they work for me. I do not know about gpc as opposed to alpha gpc, the alpha gpc with the Gen F 20+ works for me so I’m happy .( it took about 6 weeks to make a difference, and has made more of a difference as time has passed.)
Hehe, yeah, I know the basics. As said above I take high quality supps for >300€/m, each thoroughly 'researched', most 10-20 hours each.
You'll agree that it's a world of difference if a substance or variant of it has absolutely no evidence to if there is one article that says there is no evidence.
So I was "only" interested in your personal experience in comparison to my aim: Do you take flush-free B3 yourself and has that decreased your lipids, or what do you assume it does for you? Did you start α-GPC and Gen20+ at the same time, so you wouldn't know if α-GPC alone does or doesn't work for you?
I started flush free NMN with resveratrol, and now am trying one with phosphatidylserine, co q10, rhodiola and panax ginseng added, to see if there is a difference in effect for me, its a continual evolving process, so I have felt a small uplift in energy levels with NMN generally, but a larger difference with the genF 20+ with alpha gpc which I started together, the improvement has been not only in energy levels but in focus and memory, and also physical capability. but have no idea whether the effect of each one separately would be greater or lesser.
Thanks for that! Phosphatidylserine is one I hadn't heard of before, but seems it's for brain, not body. Well I'll be taking the whole bottle of alpha-GPC, seems no side effects. Always have to watch out that things good for energy don't disrupt my sleep further tho, so mornings and keeping a wary eye on my tracking protocols ... . O.o
Well done already. You have accepted the fact that she needs help. Keep up the good work.I have a husband who understands. He knows when I find it difficult to get out of a chair and softly asks what I need. He never sighs or moans. He understands. I hear him singing when he walks around the house. He knows what makes me smile. I would rather have such a loving husband and have fibro than have a moaning git and no fibro !!!
You have already done something for her and that uis by believing in her and wanting to ask how you can help her. It can be easy to forget sometimes but you will get through that.You can be with her to support her at appointments and if she struggles with her memory be that for her.Be patient as she will might struggle to do things .Others will help by suggesting supplements if she is able to take them.Was she offered medication
You sound a lovely partner to her
It’s little things that make a difference. Noticing if she is flagging whilst you are out and checking if she needs to leave, sit and rest etc. accepting that your best laid plans may change at short notice if she is having a bad day. Carrying the bags, lifting things without being asked, an arm to lean on, grabbing the best parking space. Just really being mindful.
But at the same time, encourage her to stay as active as she can be, go for walks or do a gentle class. Don’t be put off going out and living life albeit may well be interspersed with regular rests either before or after activity.
Pacing is key, finding that sweet spot between being active and not overdoing it. It’s something lots of us struggle with. If you need to help explaining this to friends or family the Spoon Theory may help you with this. There’s lots of posts on here that go into more detail.
If you have it in you to ask this, then your mind, heart and spirit are already open and you will learn readily enough. The physical aspect will still be a huge challenge but, yes, loads of warriors on this site with experience and suggestions of how to cope with it. Whatever happens, I feel you will both grow in compassion and caring and both find certain unexpected strengths. Exploring both your creativity will offer much. Very, very best wishes. - I very much second the advice below. D-Ribose plus cq10 etc gave me half my life back when I needed it.
I was diagnosed with Fibromyalgia in 2017 this was after receiving a diagnosis of muscular rheumatism when I was pregnant with my first son who is now 48. After the diagnosis all the medications I had been on previously were changed. They did work but I then decided that just maybe instead of depending on other people to manage my pain I would try and do something about it. I am not medically trained I was just fed up being sent from pillar to post only to be told we can’t help you it’s Fibromyalgia. I started by looking at the medications. Googled them to see what they were supposed to be doing and what they were actually prescribed for. I cut out all fizzy juices, then all citrus, I don’t drink alcohol so I didn’t need to worry about that. I then looked at the foods I was eating. Certain foods can actually make you feel worse. It is a long slow process as I needed to keep a diary on what I was eating and if I felt worse after eating or drinking something I didn’t eat or drink it for a couple of weeks then tried it again if it still affected the pain I knew then just to leave it. There isn’t a lot I can tolerate mainly plain chicken and lots of fresh veg. I can only drink tea, plain water, I will have a coffee or hot chocolate but not very often. As I’ve said in previous posts I go to an Osteopath which helps. I also googled to see which herbs or vitamins would help with the different illnesses. I bought Turmeric, cranberry, fish oil and cider vinegar capsules. I’m not saying I’m without pain and other symptoms of Fibromyalgia but I am coping better on a daily basis than I did when first diagnosed. I hope this might help your girlfriend but it is a slow process but something I have found helped me. I know it’s hard trying to move with the pain but it’s got to be done. As we can’t let this illness rule our lives.
Your support will help no end. If you’re able to anticipate her needs, that can be really helpful. And just ask her if there is anything you can do when she’s struggling - being able to share with you will probably be a huge help.
Well done for being such a proactive partner 💙
Fatigue is a hard one. Rest and significant amounts reduction to unnececary movements can help. I would be happy to take a look at her diet as that might help the most, if she would like
Not what you're looking for?
You may also like...
Fybro and endo at 23, help?
Is there anyone our there who can tell me what to exspect? Or anyone who has both the conditions? I
Help! I have fybro and I've put so much weight on lately
Help! I've recently put a lot of weight on and I'm already really big so the extra weight is causing
Fybro :-(
of the assessment report. I have now received this and wanted to ask can anyone advise -...
Does this sound like fybro and if so how do I get my local hospital to listen and help.
my head to my toes I have been diagnosed with tinnitus in both ears.And I am having treatment for...
The lack of medics not recognising Fybro!
like back pain. I lost my rag with her and sent her packing with her OT student.
Feeling drunk and wobbly! Fybro
Recognising fybro pain 
Is this what fybro feels like?
fybro made worse by drinking alcohol
Can Flu Jab affect Fybro?
