I just found this website tonight, I'm a noob...so not sure where to start. I turned 43 this past week and the last 2+ years have been the hardest of my life. Two years ago I went back to the US (I'm American but live in the UK) to see my family. While I was there I had to have an emergency appendectomy. No big thing, I healed. When I came back from the US I started going downhill. I was more tired, doing things like showering became a chore. If I got a cold I went down for the count. And over the months it got worse and worse.
The April after I came back (so 8 months) I came down with some kind of virus that the Drs could not identify. I felt like I was going to die. I couldn't stand without feeling like I was going to fall over, I couldn't sleep, and I ached everywhere. It was horrible.
I got better, was able to sleep, but I haven't been the same since I came back from the US. The Drs have tested me for everything and I saw a CFS specialist who said that I have probably had CFS since I was a teen, but he discharged me from his clinic as he said that he could not help me. The guy was more interested in the relationship I had with my husband than how I felt (he made us wait in the waiting room for over 2 and a half hours for my appointment, and I was ticked off by the time we got in), and was mad at my husband for irrational reasons of being in England vs. the US where I wouldn't wait over 2 hours for a scheduled 6 months in advance appointment. The guy was a bit all over the place. But at least he did say that yes I have CFS. But that's where his help ended.
I don't have a normal life anymore. I used to go to the pub, I used to go see friends and do things with my kids. As I said, I turned 43 last week. It took all the energy I had to get ready to go to the movies and dinner with my family. And then, just like always when I 'do' something, a day later I have a sore throat, I'm sneezing, and it feels like I climbed Everest. This will last anywhere from 2-7 days. If I go to Sainsbury's for a normal shop, a day later I will get the CFS cold. So now I loathe doing anything. Because I know it will make me sick.
My husband is amazing. He has picked up the slack big time. He does the dishes, he cleans (the house is a tip but we suck it up), and he has kept our business running (I'm still the CEO and Founder in general...it was my company...but we've been running it together since I moved to England 16 years ago). I'm lucky. I know that.
And my kids are amazing too and help out a lot. They're the reason I'm still here. I don't want them to have to suffer without a mother. Even if I'm one that is sitting on the couch and can't go camping with them or take them shopping like all the other Mom's...my husband says that is better than not having me at all.
That being said I feel like a worthless human being. I am not the mother I want to be, I am not the wife I want to be. I am not the person I want to be. Because I can't be...I just don't have the energy or the stamina to do anything. And when I do, I get sick.
I'm at my breaking point. The Doctors don't seem to be very proactive in helping me. I have to take them ideas like like me see a heart specialist (as I have had weird heart things and mitrovalve prolapse sp?). They don't seem to want to help me. The CFS specialist disregarded me. I feel very alone in trying to fix this...and where the NHS is great for general stuff, it has been utterly crap at helping me on this. My GP is nice enough but I have had to ask for the myriad of tests, and all came back fine. He doesn't suggest anything else.
I have tried things on my own. I don't drink anymore (over a year). I have tried some exercise (I get sick every time I have done it, even for 5 minutes of light pilates). I am currently doing an elimination diet (over a month), still no energy back. Nothing seems to help.
I stay up later every night because I hate going to sleep (I sleep well generally), because I hate waking up. I lay there in pain, a lot of times with horrible tingling rushes all over me like pins and needles, not wanting to get out of bed. And when I do, I don't know if I will have enough energy for a shower. And then I just make it to the couch where I either am curled up in a ball watching a movie or am on my laptop playing video games or attempting some work (rare that I have that kind of energy).
Honestly, I am not sure how much longer I can live like this. I just want a Doctor to take an interest and actually try to HELP me. I know my husband is in my corner, but I feel like no one in the health community here in England is. I feel abandoned and that I will never get better. And I can't be like this for the rest of my life. If I am...it's not a life, I'm basically a lump on a couch who suffers everyday so my kids have someone to call Mom. And yeah, I will do that for them...but it's soul destroying and I'm starting to lose my actual will to live.
Thanks for reading x
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Sybariss
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I am sorry to read about your misfortune. It sounds like you have had this bad for too long. I wish you had recieved better care from the medical profession as well.
Have you spoken to the doctor and received any medication or councelling for depression? It is very common to suffer from depression as a result of this condition. I lasted about two weeks into the original virus before asking for meds! Yes, I'm in the same awful symptoms situation (4 months so far), but the medication helps prevent suicidal ideation and reduces the day to day feelings of misery. You could also benefit from talking to people. I know sometimes it's really hard, but if you can do short talking sessions with a trained counsellor/ therapist it should help relieve the heavy burden you are carrying.
I'm choosing to believe I will get better someday. It's the only option to keep your sanity. Allow yourself to be ill and don't beat yourself up about it. Focus on what you can do. I've had to develop a few new hobbies I can do in a sedentary state. Puzzles, board games, arts and crafting these are all things that you can do on better days and don't burn loads of physical energy. Obviously, chess might trigger a headache so choose your new hobbies wisely. It's so important to do things that take your mind of this condition and help you laugh again. What things could you do as a family to get you laughing together? In fact I will create a post asking for ideas on this very subject.
Sorry to hear. The good news us there us something that helps a lot if ME/CFS sufferers and it's called Low Dose Naltrexone (LDN). GPs know nothing about it, no most of the ME/CFS community! You won't be able to get from your GP if living in England or Wales but there is Dixon's Pharmacy in Scotland that will supply it after consultation with you over the phone with one of their doctors. Research it on Google and YouTube and you will see. Its giving me my life back!
Unfortunately your very unlikely to get any help from conventional doctors. If you do please let the rest of us know.
In the meantime buy sarah my hills book, read and follow it.
Start eliminating chemicals, i.e fortified processed foods and try and ancestral diet (low carb) these helped me alot.
Then start on the RCP listed on gotmag.org and join that face book group. Order the iron panel blood tests and a consultation for a hair mineral analysis and see what's going on.
Im 2 years in and wasted 18 months with conventional doctors, nhs and private. They have no clue how to get to thr bottom of these chronic illnesses, or want to. I felt better after going keto genic, upping supplements like magnesium, cleaner diet i.e organic and grass fed meat, foods rich in minerals. (Sarah myhills book)
I started to even feel 80% after following the RCP (gotmag.org). I'm 3 months in to the rcp, but now been slowed down with 2 bouts of the flu the last month.
As energy develops start following other advice and foods on the gotmag facebook group. I.e kefir, bone broths, msm, organic shampoos, toothpaste etc.
All these things seem to be working. At my worst i was bed bound and unable to stand for more than a few minutes. Always urinating, disturbed sleep etc
Think positive, be strict and focus on this. Hope in the next year my health will reverse and will continue past what it was and start to feel better than i ever did. With what you learn you can use this on your family so they never get sick again
The longer I am in the throes of the NHS the more I am thinking they just don't know what they are doing within regards to CFS. I pointed out that I started going downhill when I got my appendix out and they all shrugged it off with 'meh, not related' answers.
Frankensteinsbro said that the two are probably related, and I have always felt that was the case, but it was just hard line dismissed.
Anyway I have been off alcohol, take a bunch of supplements, and went to a sugar/carb/dairy free diet over a month ago. And I still am not feeling any better. In fact I have spent more time curled up in a ball on the couch than before.
So maybe I do need some sort of carbs. I am just so tired and exhausted of trying to be my own personal physician on this. I just want someone to go 'do this' and I'll get better. Cause I have tried a lot...I have tried every supplement known to man. I have tried graduated exercise, and every time I do any I get sick. I read an article nytimes.com/2017/03/18/opin... And yeah, graduated exercise isn't for me.
I am up on my magnesium (for over a year been on supplements and have spray oil...helps my bad knees). But I'll read up and join the FB group. Thank you for the advice x
Hi! are you taking any meds for depression or anxiety? I say this because I was taking Clonazepam for a few years as my GP said it would help me cope with my M.E I checked out the contents recently and found it did contain sedatives, I weened myself off the Clonazepam with the help of my GP and the improvement is wonderful. I know it is not a cure but it has improved my life greatly, Any meds including painkillers can make the fatigue worse I have found. Good Luck x
I take a lot so buckle up. I take a bunch when I wake up, and another lot when I go to bed. Morning: Optibac Probiotic, Multivitamin, Black Oil, Vit B complex, Ginseng, Garlic, CoQ10, Schizandra Berries and Trans-Resveratrol. Evening: Magnesium/Calcium/VitD, Omega3,6,9 and Vit 1k mg if I am feeling ok, 2k if I am feeling like I am coming down with a cold.
I use Oxford Vitality oxfordvitality.co.uk/ to buy most of the supplements that I can as they are cheaper and a high quality and made locally. The rest I get off of Amazon.
The Probiotic and the Magnesium are probably the most important part of it. I feel a big difference if I miss either one of those. The others I am not sure, but I'm trying. Hope that helps.
Diet wise: Fish from the sea, salmon mainly. Grass fed, locally farmed meats, organic vegetables.
Eliminating all allergic foods, for me thats tomatoes etc. Eliminate dairy and all grain, oats once a month. I'm on ketogenic diet, high fat. Lots of coconut oil, seeds and nuts for health fats. Bone broths. Up your sea salt and add trace minerals to your water. Coconut milk kefir + water kefir.
Remove all fluoride, chlorine etc from drinking water, toothpaste.
Organic shampoos and deodrants, sls free toothpaste and make my own.
Supplemention for core minerals, bee pollen, rice bran etc see gotmag.org for more information on the exact protocol and supplements i take i have just started blood donations , iron blood studies and htma testing in preparation for consultation via gotmag. Cook on parchment paper, stop drinking from plastic containers. Stop processed foods.
Next is removing cookware teflon etc.
Books to read:
The calcium lie
Sarah my hills cfs book
Free book on jigsaw magnesium site, just sign up to newsletter. Written by the author.
Sybariss hi my name is Karen. I know exactly what you're going through!! The exact same thing happened to me about 8 years ago -- I couldn't do anything I was so sick. I was just like you were for an entire year and I found this doctor who put me on antibiotics for about three months. And they WORKED! I was 100 percent in remission for a little over a year and then I had a bad cold and I had a relapse of cfs symptoms but it was NOTHING like it was the first time around. We need to find you a doctor that will put you on long term antibiotics and at least see if that helps. Oh by the way, a friend of mine, his niece in her 20's went from being healthy to not being able to move with the cfs. I told my friend to get his niece to a doctor who will put her on long term antibiotics even though all her tests are coming out negative as mine were. Finally he got his niece to someone that would put her on antibiotics for a couple of months or so. And guess what? She's back to work and recovered! Now that doesn't mean we don't get relapses. We do, usually after the cold or flu. But with time things get better if you pace yourself and you will get back to almost normal. I'm in NYC are you in the U.K.? Send email if you want to ohms140@aol.com so we can chat more.
Odds of me talking an NHS Dr into giving me long term antibiotics is going to be hard. But so I am armed going in, what kind did you take and what mg, how many a day, and for how long? If you give me that I can tell my Dr exactly what I want and hope he just does it. Worth a shot...I'll try anything. Thank you so much x
First I was on doxycycline (milligrams I don't remember I can find out) for three months. By the end of the first week I felt better. You can't go to regular doctors for the CFS they are too dumb. Try to find a Lyme disease rheumatologist like I did. I didn't test positive for Lyme disease but the symptoms of cfs and Lyme disease are the same! So the doctor said let's just try treating it with antibiotics and it worked. There are usually relapses when you're under stress or have a bad cold but it's much easier to get back on your feet than when you are as sick as you are now.
So go to other doctors and basically beg to try antibiotics you have nothing to lose.
For now, let me ask you something. Do you ever have times or days where you feel better, like almost normal? Do you have a tendency to try to do a lot more activity within the time period where you do feel bette? Let me know because for now I can give you something to try. You may have already done what I'm going to tell you butcwe could work on this together.
Yeah there have been days when I felt better, then I would 'do' something and then the next day I am way way worse. I feel like I have climbed Everest and been beaten with a bag of rocks. What do you suggest? PS. When I say do something, I'm talking dinner out, a movie, nothing stressful. Thanks in advance x
The fact that you cured yourself gives me a bit of hope. I have been doing the 'nothing' you speak of...I do play video games (keeps me sane). Here's what I have done to try to help this.
I stopped drinking after Superbowl Feb 2017 (2nd of Feb). I have had 6 drinks since then at various social gatherings in an attempt to feel like a normal person. And I don't drink any fizzy drinks. I am spring water & occasional cup of tea.
I take these supplements every day. Morning aka when I get up: probiotic, Bvits, multivitamin, Green Tea and if I can find them CO-Q10 (they are around here somewhere). An hour or two before I go to bed: Cal, Magnesium, Zinc & Vit D (it's mostly for the Mag). Vit C 1kmg if I am feeling ok, 2k if I feel like I am coming down with a cold, and Omega's. I have tried other supplements like Black Oil, ginseng, etc, but I didn't notice a difference.
A month ago I decided to do an elimination diet. I cut out carbs, dairy and sugar. I still don't have any energy left. Yesterday I had a bit of dairy with dinner to try to reintroduce...it was fine.
I will say I take tramadol for pain which mostly because I have a bad back but more for my knees. They have been bad since I was 15 and was told 'by 40 you are going to need a knee replacement'. So that doesn't help. Also I have a serious heart murmur and my heart tricks out from time to time and beats very irregularly or it hurts and I can't catch my breath (they don't know why I am waiting to see a heart specialist). So I do take valium for that so that I can breathe when it happens. Otherwise it gets so bad I end up in the back of an ambulance with my heart freaking out. The ER doesn't know what to do so they give me valium and end up sending me home. And the valium feels like I am putting cello tape on a leak at the Hoover Dam.
So can I ask what you did specifically to cure yourself?
MyHill's site looks good except for the exercise part. Every time I exercise I end up sick. Even if it's 5-10 minutes of pilates.
Basically I am trying everything...all of the supplements, all of the diet bits. I know some things work for some people and not for others...I just want out of this. Thanks for the message x
Yep been there done that. It is desperate isn't it and I was so angry that nobody cared or understood. Pacing is what worked for me. It took me ages to get it right and I still mess up but it gives me a life. From what you have written the first problem I notice is that you are not resting very well. Resting means no physical activity, no brain activity and no emotional activity. Playing video games is an absolute no no at the stage you are at. It uses masses of energy (brain activity eats up energy) particularly if you are doing something that needs hand eye coordination . Resting is lying down with your eyes closed and WITHOUT GUILT or boredom. You can meditate or listen to music or audio books. (There are loads free on You Tube) After 30 minutes (or more if you need it/want it) you get up and do normal activity for 10 minutes, ideally something that brings you pleasure but it could also be having a shower or loading the dishwasher. Then down to rest again. You adjust the rest vs active periods until you find what you can maintain for a week without feeling ill. This is called finding your baseline. Then you do all the other stuff people have mentioned to try to increase your baseline.
I can write for days on this subject but I'm sure there are sites which explain in detail how to find your baseline, how to increase it, different ways of resting, how to save energy (for example I always sit down to clean my teeth as it saves energy that I can use to do nicer things). The next thing to look out for is the 3 day lag. Once you have paced your way back to feeling better, you think OK I can do this, then 2-3 days later you feel the effect and you are crashed out again. This is actually scientifically explainable, it reflects how long your body takes to make the ATP it uses for energy. It is just very confusing unless you know to look back 2 or 3 days to understand where you did too much.
Then finally I found a mindfulness course really helpful, it changed how I thought about things and finally helped me to let go of the anger I felt about living with this illness. It is a massive adjustment to go from being someone who is very active and high achieving to the chilled out mellow individual you need to be to live with this.
Medication that helped me: low dose SSRI made me feel like me again; very low dose amitriptyline because my brain doesn't switch off at night and my daughter (who also has the condtition) also needs Gabapentine for pain. That is an awful lot of information heading your way from all of us. I hope it helps. If you have any questions just ask.
Hi Frank, I like the "do nothing" advice even though easier said than done. When I first got CFS nobody knew anything about pacing and I just kept exercising like I normally did and I kept on getting sicker. I was lucky that's long course of antibiotics put me in 100% remission until I had a relapse after a cold a year later. It takes a while to get back to somewhat normal after the relapse because I have a tendency on the days that I feel better to do too much activity. So I'm trying to take frequent rest breaks. How did you get better without antibiotics? What was your strategy with resting and pacing?
I completely understand what you are going through, as with all of the others on this thread. I think pacing and finding your baseline and resting loads is very good advice. I'm currently at your stage and I'm looking for anything to help. I take an antidepressant called duloxetine which helps with mood and pain and I take Tramadol as well.
If you need the pain relief keep taking it until you start to feel better and your pain is under control. I found taking an anti inflammatory really helped too as it reduced the pain more and to my mind shows that there is clearly an inflammatory aspect to this condition.
Unfortunately for a long time we were abandoned by the medical community and dismissed as symptoms manifested by unresolved psychological issues. There is finally some proper medical research coming along now so I'm hoping and praying for a breakthrough
I suggest you read as much as you can about the condition and experiment with diet and supplements and learn to pace yourself properly will really help, and if you don't feel well enough to do something then don't do it, especially if someone else can do it for you.
But please, if you feel this low in mood and you feel you may do something to hurt yourself then tell someone close to you so that they can help and see a Dr. I had counseling to come to terms with my illness and it really has given me a different aspect on it and helped with some of the guilt. I still have to work at it though but if you do these things it will help with your state of mind. Try mediation and audiobooks to relax. I was really sceptical of the meditation working but it really does. Look up Andrew Johnson relaxation videos on YouTube and he has an app you can download and use too.
You are doing your best and regarding everything your body is going through how can you do anymore than that.
I know you will find something that works for you from the advice given above, even if it's just a little bit and just try to be realistic about what you can and should do though.
Contact me on Facebook like the others have said under Rebecca Hails if you need to talk and are feeling fed up. It's better to share when you feel that way, rather than bottle it up.
I hope you found some comfort and help from this thread and continue to update us with how you are and what you finds helps you.
Hi, I'm not going to add any more advice as you've been given plenty of excellent stuff already. However, I am going to recommend a Facebook page, purely to help your general mental health. It's called ME/CFS POSITIVITY. It basically consists of people with ME from across the world sharing jokes, pictures, photographs, videos, positive messages etc. It certainly lightens the day and makes you laugh. Be warned, though, some of the humour can occasionally be, shall we say, more adult orientated.
Hope this helps, if only to lift the spirit. Look after yourself xxx
PS For me ubiquinol works better than straight coenzyme q10. Apparently it's a more easily absorbed form of co q10. It's easily available from Healthspan or Amazon, but it's not cheap when money is tight.
Your story sounds pretty similar to mine, except I had CFS for about 4 years when I was in my mid 20s. I am now 42, and have been fine for 15 years or so. The medical profession offered me nothing useful. For more than 3 years I just did not get better, did not matter how long I rested. I eventually got over CFS by going off all products on my skin. I bet you're putting stuff on yourself every day - make up, skin creams, deodorant, shampoo, sunscreen etc. You're overloading your immune system with it. Don't use any organic stuff either. Nothing on your skin or hair but shower water and a really minimum amount of basic soap. You've got to stop using it all for 12 months, minimum. After getting off that stuff, within about 6 months I noticed that I was starting to feel dependably better. After 12 months, I had pretty much recovered. Then you can slowly reintroduce those things to your body. But I think you will have to be very careful with them after that. All the best.
I’ve had ME for 25 years, sometimes I get out and do things, often I don’t. I don’t drink any alcohol and never use anything but eco products for cleaning, hair, skin etc. Never wear perfume, avoid noise, bright lights, extremes of temperature. I rest a lot, don’t go more than 3-4 hours without eating. I found Dr.Myhill’s website and book useful but didn’t benefit from vitamins and minerals.
I know how you feel i try to force myself to do one thing a day however small make bed put a load of washing on do a couple of rows of knitting i knit alot for grand children im 55 mine started after an op i ended up with a stoma found a cream on line helps better then drs cafern but like anything else just a sticking plaster try somthing different knitting tapestry one job a day just to say i did that i did somthing try short walk every two or three days just five mins feel good day do ten dont push yourself too hard do little rest do a little good luck x
I been the same for nearly 7 years ,I got epabar virus at college I was 32 but I've had ear infections since I was 7 .after the illness I was tired had sore throat constantly headache swelling of the joints ,food sensitive stomach upset light sensitive ,my brain feels like its going to pop out my eyes my speech is sometimes muddled cannot even get a sentence out some days.My social life is really none existence my family are good but I feel it takes over. Also the NHS have done nothing to support but but trying me with different medication but they make me ill apart from my antidepressants. So I've been trying cbd oil which helps relax muscles also helps with my Irratible leg syndrome at night and insomnia. Its a very isolated illness nobody understands about it .I hope there will be a break though for all us suffering in silence. Good luck
The advise you've received has been amazing. Am also taking note!! Suggest you need carbs, or no sleep but don't need gluten ATALL. Use stevia..no aspartame instead of sugar. Simply supplements does 300 cq10 and extra high strength probiotics at good prices. For anyone stressed Dr suggested gaba. (ok) or l theanine (excellent and helps with sleep) Both via Amazon or health monthly. If antidepressants are necessary and you don't want to take there are some that work in the same way as ssri meds but if on any other medications do check there's no interactions first. Not got them handy but can get hold of them. If benefits are to be looked into atall.e.g.pip. I suggest you get mitochondria function levels test done via Sarah myhill directly. Low levels prove YOU ARE SICK!!!!!!! Good luck.
Bless you i hear how it's affecting you. Incidentally did you have an episode of stress of emotional trauma before the symptoms started? I did. I was under a massive amount of pressure for about 3 years before but I just got used to living like that until I collapsed. Since then I have had so many problems continuously. Fortunately I am under a fantastic physician who is currently referring me to a cfs management clinic to learn how to manage this. I really feel for you and would like to stay in touch with you to pass on what they tell me. I think it's awful that another sufferer is the only one prepared to help you. Whatever you wish to label it (read frankensteinsbrother's post...unhelpful) it is massively debilitating and changes life as you've known it. Let me know if you wish to stay in touch
Came across your post...I see its 3 months ago ....how are you doing? Have you had any more help...
Have you checked your B12 levels....doctors don't always test this..
Although if you have been supplementing you need to be 3 months clear of taking them...
Then test...
If you have had it tested...even if they say its in normal range but its at the low end you will still need B12 injections, as you go on symptoms not results....if you have signs neurologic probe e.g. pins and needles, tinnitus, problems such as threaten after the loading doses to have them every other day until these symptoms go...
Others have mentioned Dr Sarah Myhill, hers is a really good site for information...
She also advocates B12 treatment...it's been put on research trials and people have found they've doing so much better..( You need folic acid supplements to help with absorption of the B12)
I really hope you are learning to cope with this illness, with pacing the use of your energy...it will ease up as long as you do this....
They tested it but at the time I was taking a lot of B12 supplements so I had no idea I didn't need to be off of them for 3 months. I stopped taking them a couple of weeks ago.
I have accepted that this is just how life is now. I am looking at taking LDN which I can get through a pharmacist in Scotland, but that's a long shot that it will work. I will talk to my Dr about retesting for the B12. Thanks for that! Jeannie
Hi! I've been using earthing/grounding and organite and shungite as well as a small tensor ring. Also supplements keto and recently no sugar/dairy or chemicals. So no pain. No dizzy, but still very tired. Too tired even to write. But just joined for support. I'm on my own w/ cfs. Drs are no help so far. On disability for MI but no sympts. due to nutrician. Good luck to us all.
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I take a bunch when I wake up, and another lot when I go to bed. Morning: Optibac Probiotic, Multivitamin, Black Oil, Vit B complex, Ginseng, Garlic, CoQ10, Schizandra Berries and Trans-Resveratrol. Evening: Magnesium/Calcium/VitD, Omega3,6,9 and Vit 1k mg if I am feeling ok, 2k if I am feeling like I am coming down with a cold. 
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