LDN

thank you. yes i guess we all respond to different things. so may be worth a try (if my doc will prescribe) i may have to educate him as like you say he may not know much about it in terms of helping cfs:me.

It works for some, it makes it worse for some and it doesn't do anything for others. This to me seems like people having ups and downs and the LDN doesn't influence in any way, just like supplements in 99.99% of cases, unless there's an obvious need for them. The desperation of people with CFS is huge and people try to take advantage. The body is too complex and currently there's no medicine solution to this problem, the only good bet, in my opinion, is to rest as much as possible, try to relax mentally, avoid stress and try to test different eating patterns (eating different things, different amounts, etc). It took years for me to recover 90%.

Good advice! I’m not brave enough to try the LDN just now anyway. I’m usually super sensitive to most things so probably be the same with that too. I’ll stick to my herbal remedies & learning how to relax better. I wish I had a chef who could prepare all my meals with all the best things to eat (whatever that is) Good to dream eh! i'm glad to hear you have recovered 90%. Do you put that down to the diet you eat?

Hi Pet. Good point made by Pathtonowhere that people with CFS are going to go through their ups and downs-cycles when we feel better and cycles when our symptoms may flare up.

I do firmly believe that (at least for women) hormones have an effect on our disease/condition, at least mine! As I mentioned here before, I definitely noticed a dramatic decline in my condition after going through menopause; my symptoms flare up much more often and for longer periods of time now. Ugh.......

Agree that minimizing the stress in our lives and getting the proper balance of rest and relaxation are so critical in how we feel. I'm not sure diet has helped me much. I've tried several different ones and don't notice much of a difference in how I feel. That being said, I do maintain a healthy and balanced one and try to walk 20-30 minutes 4-5 times a week to keep my strength up. I don't think it makes my condition worse or better, but it keeps me feeling more positive.

Wish there were a "real" cure out there! Wouldn't that be a miracle? Let's keep hoping, and for the people that LDN actually helps, that is great for them! KPD

Hi KPD,

Yes i feel you have a strong point with the pesky hormones.

I’ve noticed a big decline in the last year going through that point in life... I wonder if there’s anything that really helps or if it’s the same with everything - trial & error as things work differently for everyone. Although willing to give stuff a try if it’s gentle (mostly herbal I’m more comfortable with) Years ago I see a nutritionist & I cut out soo many foods.. dairy, gluten, sugar (that’s the devil!) I even cut out fruit as she said I was eating too much & although natural sugars it was too much.. carbs , red meat, I can’t remember what else (#brainfog) I was super strict for a few years but felt constantly hungry & I lost too much weight. (I’m very slim anyway) I still don’t eat diary & sugar (where I can avoid- I check everything but hard to get away from it totally as it can be added to so many things in different forms) I eat salads & veg a lot. I also tried a blood group diet... but nothing has really given me that much benefit.

You do really well to manage your 20-30 minute walks 4-5 times a week. Boy I wish I could manage that. I struggle to get round the house most days. I’ve become so de conditioned & muscles very weak. Last year I tried a 1 minute walk in the garden every day for a month then relapsed & not done it since. Very frustrating as I used to be a real gym bunny, super fit, active & toned. Hey ho such is life eh... hell yeah it would be a miracle if they found a real cure!! Sometimes I get so hopeful when I read studies then you hear nothing more about them 🤔 where’d they go? Can be quite deflating. Like someone else said on here we can become so desperate people can try to cash in. It all comes down to money.. every aspect of it. In my opinion anyway.

Pet

Hi Pet,

During the weeks when I'm feeling better, I do manage to walk 20 minutes at least 3 days a week. Some weeks, I can manage to fit in more walks. However, I was a at a point a few years ago when my equilibrium was off so much that I could hardly walk and could barely make it around the house. I could barely wash a load of clothes or make the bed. I do think that hormone replacement has helped some. But then, who really knows, right? I can't remember if you said you were going to ask your doctor about Bioidentical or natural hormones. If you are not ready to try the LDN, maybe hormones could help some. Just thinking since you said you've been feeling worse the last couple of years, too. Hormones are critical in how we feel, and since there are more women who have autoimmune diseases (I think I've read that-correct me if I'm wrong) I wonder if hormones can make things worse. All this is such a mystery but I know my own body. There is no doubt that I started feeling worse after menopause. That I'm 100% certain of. Not much else, though.

If a minute walk is all you can do for now, then I say that's great. I do understand how frustrating it must be since you were once a gym bunny. I too was very fit and active before CFS, but those days are OVER for me. I just want to try to keep my physical strength up at this point.

Oh, how I wish we could find answers to this puzzling disease! KPD

Hi KPD,

Oh how I wish I was doing that 1 minute walk a day.. I’ve not been able to keep that up for over a year.. but it is good to hear when people have been in the same boat & have improved especially walking 20 mins a day most days, so that does give me hope that I can get there again one day 🙏🏻

I’ve not heard of bioidentical hormones? Is this something that the doc can prescribe or more natural hormones or would I need something herbal do you know? I do believe like you hormones play a big role when ladies reach that certain age. It does for healthy women so bound to play havoc with our systems when that are discombobulated! (I’m not sure if that’s a real word but I use it a lot) ha

Oh gosh I also wish we could find answers to this puzzling disease! Every day I research. I know scientists are out there trying to find the answers but they keep coming back with inconclusive results. I pray to god a cure or effective treatment is found real soon so I can gain back some quality of life back before I get too old. 11 years is long enough now, although I know there are many out there that have had it so many more. Wouldn’t it be nice to wake up one morning & it’s all been a dream (nightmare more like!) & we’re fit & healthy again!

Pet

Hi Pet,

I'm so sorry you are having so much trouble getting around the house. I hope can find something that will help so that you can gain some strength back. I'm actually having a pretty bad day, today. Made it to work for a few hours, but now I'm ready to crash for the day.

Bioidentical hormones are being prescribed more and more here in the US by MDs and gynecologists. Many women are worried about the risks associated with synthetic hormone therapy, and so they have turned to more natural ones. I don't think I can post a link here, but if you search, you'll find a lot of information on them. As we age, our bodies still need both estrogen and progesterone for bone health, sleeping, energy, etc. I'm not going to say that they are a cure for me by any means, but I do think they help just a little bit and think I'd be a real MESS without them.

Agree that I wish we would wake up feeling refreshed and rested. How nice would that be? By the way, I've had CFS for over 25 years now! I know, yikes! KPD

Wow 25 years!! That’s a long time! Way too long to be suffering. It makes me so angry that we as humans are being allowed to suffer so terribly without help of treatment at least. This has been going on long enough now! Something needs to change! We feel so helpless don’t we that we become too weak to fight.

Sorry to hear you were having a rough day KPD. I hope you feel a little better once you’ve rested up some more.

I will definitely look up the bio identical Hormones, thank you

Pet

HI, yes be interesting to keep us posted how you go with it. i hope the anxiety doesn't cause you too many problems. are there any interactions with other drugs do you know? i hope you manage to find some relief. i'm a bit of a scardey cat when it cones to trying new things so may wait a while until i've done a little more research. Good luck.

HI,

yes hopefully admin are reading & will try & fix this issue!

Hi Pet,

I hope so, it was getting frustrating as I would look at talks I was having and there were messages there I knew nothing about, they weren't even going to spam. definitely getting them today though.

I am a bit like you, not sure about trying medical interventions until I have reassurance I guess.

Beverley

HI Beverly,

i have also been Receiving notifications - albeit later than the chat was posted I think. Maybe admit fixed it after all. (Thank you admin)

I also joined another online group yesterday LDN for cfs/me & fibro. I put the question out there too & had a few positive responses. One lady tells me after 3 months of taking it she learnt to walk again & recently walked a mile! With no repercussions. She also had her 1st jog on Friday!!! JOGGING!!! I dream of the day I can work out again!! & she is once again applying for jobs - after 11 years of struggle!! This really made me smile.

Reading a few other posts it can cause anxiety in some & they say they miss for a day now & again & it helps. One said it really helps her sleep which as we know can be a massive help! (Although can cause vivid dreams)

I need to do a little more research for a while & trying not get my hopes up too much but this is the 1st thing in a long time that’s giving me some hope 🙏🏻

Hi pet,

That sounds really encouraging, Is it a life long medication? I guess the anxiety issue calls out to me as my levels can get pretty high as it is. I wonder if you have pre existing issues that it hightens them?

I remember a couple of years ago light therapy was a popular topic on here with some people being helped by it? I don't know if the revamped site still allows you to access the old threads like it used to but, maybe worth a look while you're researching.

Beverley

Hi Beverly,

I’m really not sure if it’s a life long medication. I wonder if people’s immune system starts to work properly & they can gradually wean off (I’d like to think so!) or if they wean off & get symptoms back again (not so good) I’ll have to put that question out there! I also worry about the anxiety effect too as also have this. More research needed when I’m feeling up to it.

Re:- the light therapy - what is this? What kind of light do they use?

Gosh I sound so desperate! I am! Ha... As we all are!!

Pet

Hi pet,

As far as I remember it is the light boxes they use for things like Seasonal Adjustment Disorder (SAD)

I think we would all prefer to be our pre-cfs/me selves and anything that helps others could help us and maybe worth a try! I would love to go away for a month and have treatment and come back my "normal" self , that would be awesome. I do know of people who have recovered though without any treatments so, there is hope of recovery from different angles.

Good luck with the research.

Beverley

Oh how I love that idea / to go away for a month & come back my pre cfs/me self. I'm a shadow of my former self, but i'm still hete somewhere inside waiting to break free. I often say I wish there was a rehab place we could do this.. good to dream. I love hearing of people’s recovery stories & I’ve heard a few. We have to live in hope 🙏🏻 that one day it will come!

Ha ha I have the same dream, I will go away somewhere, some relaxing rehab place and be my pre cfs self. In fact it has became a bit of a fantasy, a way of falling asleep when I am worried and anxious. I also feel that my real self is still inside just waiting to break free. I also love reading about and reading recovery stories. You have to stay positive I guess.

By the way one of my doctors also prescribed low dosage naltraxone. I have taken it for a while now with no effect. I am in a relapse but I dont think it is connected with the low dos nal. I am about to speak to my doctor tomorrow in fact to discuss.

Hi Charlie,

Oh yes it’s so good to be able to visualise - it can really take you away.

Wow you’re lucky one of your doctors prescribed LDN for you, it’s quite rare it seems. What dose are you taking? I hear low & slow is best. Lots of people say it can worsen symptoms initially for a few weeks as it kicks up the immune system & it fights. I’ve also learnt most people say they take a 1 day break every week from it.. even those that have been on it for years do this, so it may help to miss a dose to kick start again??

pet

I am up to 3mg a day at present. I probably did the wrong thing with this. I started on 1.5mg back in early April, took it for six weeks. During that time my symptoms went from mild to moderate back to mild. I stopped taking it as I felt it wasnt having any effect. About six weeks after stopping my symptoms worsened again. I recommenced 1.5mg about 3 weeks ago, now up to 3mg. My doctors has said ramp it up to 4.5mg next week. I am going to give this a go for 3 months and see what happens. I have no idea if my swing in symptoms has anything to do with LDN. Even if I improve how can I or anyone say it is down the LDN? As another poster has said on this thread symptoms fluctuate anyway, they can worsen and/or improve at any stage. Total nightmare in terms of taking medication. Sorry to be so negative.

Hi Charlie,

Don’t worry, It’s good to have a rant & this is the right place as we understand. With the LDN it sounds like a mind field knowing if it will help. I joined another online group & they say low & slow. They recommend to keep at the dose your on until symptoms subside before moving up to the next dose but like you & others have said how do you know if it’s the side effects of the LDN or if it’s the CFS/M.E symptoms that’s causing you to feel worse. Maybe you could try & keep a diary of symptoms to look back on & score energy levels 3 times a day & sleep etc.. just a thought as sometimes we can forget.

The only way to know if it works is to have at least a few dozens of patients and make a statistic. The internet is very deceiving. If 1000 people take it and only 100 feel better, most probably it doesn't work, because 100 out of 1000 normally get better anyway, but from those 100, maybe 30 or 40 go on the internet to spread the word about the product. The other 900 won't talk about it on the internet, or maybe a few of them do, because people in this condition try a lot of supplements and don't go to the internet for each of them to say that it doesn't work, and this way you're lead to believe that the product works.

If these products really worked, the effects would be a lot more obvious and not for a few cases here and then. Also, why do you think manufacturers don't test them on batches of people in controlled manner? They sell them as food supplements so that they don't need to prove their effectiveness.

Keep in mind that these so called medicines sell at a relatively high price and they only cost a fraction of the price to produce. It's the perfect method of making huge money, especially from desperate people. CFS also is a condition disregarded or overlooked by most doctors, and this makes the patients especially vulnerable to buying all sort of medicine, they don't need that much proof it works, they're willing to try anything.

I myself tried a lot of this and that for half a year, and the recovery came a year after I stopped all the supplements, after some longer hospitalizations. They couldn't find anything, and I knew they wouldn't, I just liked staying in hospital because I was resting a lot, not dealing with people, not having any worries. Then I took some leave from work and after that I started to recover gradually.

Hi there pathtonowhere,

It is good to hear that you were able to improve through rest in hospital and time off work. Do you think that the suppliments you took could have built in your system and helped a bit towards healing once you were able to rest? I think it is, as you said in your post, hard to know sometimes the full extent of what aids recovery.

LDN isn't a suppliment though, it is a drug used to treat people with autoimmune issues so has had trails for people with those issues and this has led to some connecting the dots and trying the treatment for cfs/me.

Beverley

Well, ideally they should try the drug for CF in a study, not prescribe it without being able to know the outcome. I don't think supplements take one year to start having effects, I even felt worse the one year after I stopped the treatment (not because of the supplements, but because I didn't have the opportunity to get longer rest).

Some studies found an immunological link to CF, but others believe it is of a nervous system nature. Or maybe there are different categories of CF. There is an old Japanese guide to this kind of illness, a manual of how to get back to track, with isolation and rest, and then slow reintroduction to normal life.

Before recovery I followed the evolution of different people with CF and almost all people had no benefits from drugs or supplements, unless they had a big deficit of some kind, but most recovered with no drugs, just through rest, diet, avoiding stress, moving away from annoying people in their life etc.

Hi there,

You certainly have a point when it comes to rest & relaxation, although I had to give my business up 6 years ago & have become pretty much isolated but I’ve never got to the same level as I was before that, so not sure if I pushed myself too far & done lasting damage. I’m so glad to hear you have made 90% recovery. I love to hear recovery stories (& I have heard quite a few) how long had you been sick?? Some people claim it’s due to a change in diet or certain supplements combined with proper rest but I wonder if the body just repairs itself in time. The body has an amazing ability to heal itself given the right conditions. If I had mega bucks I would so build a retreat for sufferers to go for 3-6 months (or however long it took) to recover if it was due to the right diet, rest, relaxation & no stress. I agree stress is a major factor... life is 10% what happens & 90% how we react to it (I read that) learning to accept it is what it is & let things be is ideal but not easy as we have built up unhealthy ways, belief systems & patterns which doesn’t always serve us. It can take a lot of brain training to reset.

I’m putting LDN on the back burner for now. Although I’ve read a few positives I’ve also read as many negatives so not ready to take a leap at this point.

Pet

I tend to believe it has a huge psychological component, because there are people who don't care about anything, are always relaxed and don't give a damn. Those people rarely get CF, at least not without a major accident or illness.

I've been very sick (almost bed bound at times) for almost one year and a half, then in the second half of the second year I gradually recovered up to 50%, then in the 3rd year I got to 90%. I still get 10% of the muscle twitches, gut discomfort, malaise, pains, insomnia and anxiety, but now I work full time and I had many days when I walked 7-8 hours or drove 17-18 hours non stop (not without some mild twitches and gut discomfort the next day).

The dumbest thing I did is that I had mono (thought it was a cold) and went to work while having it, with body pains, horrible malaise, gut problems. I found out months after that it was mono. Maybe if I had rested for a a few weeks, I wouldn't have got into this situation, when for almost 2 years my life was a nightmare.

Also, I saw very few recovery stories, most at the 2 year mark, but the vast majority seemed to not recover. I was really pessimistic because of that. Most people that recover go on with their life and don't come back to the internet to report, people mostly come to the internet when they feel sick, to complain and get information.

The best thing that can be done is at the medical level, doctors should have data collections with all CF patients, the symptoms, the possible causes, the time they recover (if they do), the diet, the drugs tried. This would be the best chance to discover a cure or a course of action for this problem.

Hi there,

I am definitely curious as to how you found out people don't get cfs/me if they don't give a damn? My knowledge of the condition is that:

It can affect anyone (babies are born with it)

it usually has a trigger (such as mono/virus )

It can be genetic

whole towns/groups can come down with it at the same time.

Beverley

I’ve heard it tends to be the type A personalities that are more prone, high achievers, perfectionists, workaholics, ambitious etc.. weather this is because we push ourselves hard past our limits & maybe get total burn out I’m not sure. I had a mixture of burn out, emotional trauma & an operation all around same time. I also feel as Beverly said it can be genetic. I believe my mum had it for years but was misdiagnosed.

Your right with the recovery stories - not many tend to share on line as they don’t want to go back revisiting it all..they want to get on with their lives & forget all about it. Most I’ve heard are word of mouth, someone who knows someone. Higher success rates with younger people, weather this is because they get looked after 24/7 I don’t know. Who knows! If only we knew the answers we’d be doing exactly what it takes.

You sound like you’re doing amazingly & I’m so happy for you. I wouldn’t wish this in your worst enemy. Not that I have one ha. To just live with the odd muscle twinge is something I could only dream of right now. I’ve had M.E 11 years now. I hope it continues for you. Are you taking anything for your gut health?

It's just an assumption from what I've seen, the fact that most people that end up with CF get stressed more easily in general.

Hi again,

That's an interesting assumption. maybe you could put it up as a discussion here?

I was, before cfs/me, described by my friends as super calm-even with 4 children! It is, what some may call my personality? I am now a different person. I would love to see other people with cfs/me responses to your assumption.

Beverley

I agree there could be a genetic component to CFS. I think that my mother also had some type of autoimmune illness, but we didn't know as much as we know now. She took multiple naps a day and was tired most of the time. She seemed to function fine after her naps, though, so her case may have been more mild than mine.

In the 1980s many believed that CFS only struck people who were high stung, had type A personalities and were very ambitious. There is no doubt in my mind (at least for me) that stress plays a major role as I also got sick when I was going through a very stressful time. My symptoms also seem to flare-up more when I'm under a lot of stress and worrying about something.

I do think they are finding in newer studies that CFS can strike anyone, though, but who really knows, since there is still NO definitive test to diagnose CFS! I think there could be several subsets of people with CFS with different causes. That's probably why they can't find one particular treatment that works for all. Unfortunately, there is so much we still DO NOT know!

I'd also be curious to hear from those who have CFS what type of personality they have. KPD