Chronic fatigue
Posted , 9 users are following.
I have been diagnosed with CFS and have been housebound for a little over a year. I was wondering if anyone has completely recovered from this horrible disease. I have always thought the human body would eventually heal and recover after abundance of rest and sleep.
Is recovery even possible? Or only can be managed and live with for the rest of my life. I hate to be a burden to my family, it doesn't seem fair to them but I'm grateful that they are always there for me.
Besides pacing myself, is there supplements that has helped in seeing some kind of improvement. My fatigue has been plateaus with dips but haven't seen much progress. I've been functioning about 35% hoping to at least get to 50%.
It just seems like a uphill battle falling backwards and climbing back up seems impossible at times.
0 likes, 33 replies
julia24924 LyLy
Posted
Hi taro
You sound as if you are in the throes of it. Everyone is different, and I believe that for some CFS can be the symptoms of another possible underlying condition.
I was diagnosed with parvo virus and viral meningitis back in 2008, I never fully recovered. The first three years were the worst as I had small children, and wanted to return to my full time job. That didn't happen. I took the next three years out because I had to. Since then I began to manage what later was diagnosed as CFS. I rested when I could, and exercised when I could. I found vitamin C, D and probiotics essential. I then went on a drug called LDN which helped my immune system. Avoided gluten , and my intake of substances, such as alcohol, tea and coffee. (Moderation) I tried yoga and short walks first and began to build up strength. I then took up Karate (mid forties! ) And I am now training for my black belt! I still relapse, maybe twice a year, badly and mini relapses every couple of months, just coming out of a bad one, but I manage better because I accept it and don't fight it. Relapses are awful, but I am blessed with a family who understand. I suppose what I am trying to tell you is that there is hope. I am back to full time work in a job I love, and I am studying psychotherapy in the hope of retiring early so that I may help others who have gone through this awful experience. Be brave, and push yourself when you can, rest when you need to. Be thankful you have a family who care. 💚
LyLy julia24924
Posted
Hi Julia,
Your recovery story is very encouraging, it gives me hope. As I too have kids to care for, giving up is not an option. At times this disease has broke me down enduring the pain and misery death sometimes doesn't seem too bad. I try to snap out of it and stay positive.
I've come to accept that I will never get back to my old self again and I don't even remember what normal is anymore. Knowing others like yourself who have gotten better and are doing great things is uplifting.
Maybe the first 3 years will be the hardest in managing this illness. Thank you for sharing your story, I am inspired. I wish you all the best.
julia24924 LyLy
Posted
Ty Taro
I am not fully recovered! I just manage it . Pacing is very important. But I also felt I had to push myself a little. Some nights going into the karate I would feel completely exhausted and holding up my arms was painful but it still nearly always makes me feel better. What is important to note is that every case of CFS is unique, someone else mentioned that some people may suffer post viral fatigue, that is different and short term. I have had CFS for ten years now, and I have a better judge on my triggers. I'm still prone to bouts of being bed bound and that is still a living hell. My job is a dream job and I don't start until 10am! And I have all summer off. June July and August. I find sun shine really helps. Being heard really helps. The right combination of vitamins, fresh fruit and veg, especially berries. I also think that a few good friends and an occasional bottle of wine and laughter helps even if it takes three days to recover. Acupuncture helps relieve my pain. I found that no caffeine helped me absorb vitamins. I try to avoid, lactose, meat, and caffeine. I was shocked at the difference of cutting out meat. I sincerely hope you find peace, and that you have family and loved ones who understand. My family are not the most understanding but my husband and kids are. My sister is coming round. My mother thinks it's all in my head! 😊😊Off to the doc this morning, as I need to organise a scan to rule out MS! Never ending! Take care. J
wknight LyLy
Posted
Yes I have recovered BUT I am always careful to not overdo it. I cycled over 50 miles this past weekend, something I wouldn't even dreamed of doing a couple of years ago, just a few minutes would have put me in bed for days.
What did I do. Well my GP was marvellous and inspired me when told of another patient who was on the road to recover and he did triathlons. At the time I thought not possible, but it was explained to me that he had achieved this by pacing, so that is what I did.
I learnt to say No a lot. That was very hard. I describe as trying to run a marathon when you can't yet walk and that is what I did. I started by finding a level of activity that didn't have any adverse affect on me. That was difficult but once I found that starting point, it was a very,very slow road forward. I would add a very small amount of extra activity and see if it put me back. Small is the key word here. If that worked then I would on only adding that extra level of activity on some days, others, it was back to the previous level.
Doing it this way, you start to feel encouraged but you are not feeling tired all the time. Very,very slowly I increased the activity and if I felt I was doing too much I would have a serious rest day or maybe two. Almost three years on I would say I lead an almost normal life, but every so often I do too much and that us it, rest up for a few days.
I did this all by myself, no help from anyone and it worked, but its very hard keep saying No, best of luck.
abbys213 wknight
Posted
LyLy wknight
Posted
Hi wknight,
Your story is very reassuring and truly amazing with just pacing. It makes me want to focus on pacing instead of being stressed out doing research on too many things that could work.
It makes me realize that the body can recover if we give it enough rest. In the begining I thought I was pacing but really I was pushing through my fatigue at times. I'm truly learning to allow myself to do nothing if I'm too weak and not feel guilty.
Thank you for taking the time to share your story. Take care
jackie00198 LyLy
Posted
You absolutely can get better. I've met people who've totally recovered, some without doing anything. It sounds like you have a good attitude, which is a good thing. You mention pacing, which is another important key to getting better, as are rest and sleep. It's important not to push through the fatigue. Also, a subset of people are helped by low-dose Naltrexone, and anti-virals, like Valcyte. For these, you really need to see a doctor who's up on the latest ME/CFS research.
LyLy jackie00198
Posted
I am going to see a new rhuematologist who has experience with CFS and I will ask her about those medications. Finding a knowledgeable doctor is very hard and frustrating. Again thank you for the information.
janet71271 LyLy
Posted
Hi . sorry to hear you are struggling with this damn awful disease. Everyone is different because we are individuals . Cfs/me covers a broad spectrum. Mild , mild to moderate, moderate, moderate to severe, severe. Having a positive outlook is a bonus , but won't cure you . I have a very positive attitude but have had ME/CFS for 21 yrs now . and get worse not better. And have been housebound for many years. Some people may recover but mostly because they didn't actually have it. Chronic means continually all the time or persistently reoccurring but it never leaves our body. Some can get back to a near normal life ie back to work. But still get tired quicker and fatigued if they overdo things. And get more tired doing most things anyway . so a livable level can evolve in time .A complete recovery with no further issues ever again is usually due to having maybe a post viral fatigue and not chronic fatigue syndrome.
The only supplement that ever helped me a little was magnesium injections. But I had to stop having them due to other effects from the actual injection. I was on high potency hypoallergenic vitamins and minerals and they did nothing for me. I am currently on vit d as my level is recurringly low. But it doesn't make me feel any better. However it does help some people and low vit d is very common in me/CFS. Common in society actually !
Try not to worry and think of yourself as a burden. It is not your fault you are unwell. And sounds like you have a caring family . worry and negative thoughts cause more stress and stress is the enemy of me/CFS . just do what you feel able to do which some days might just be getting up and dressed.you are already pacing yourself so avoid overdoing it or put yourself under any undue , unnecessary stress or activity. Might sound selfish but you have to put yourself first quite a lot of the time.
I hope you will start to improve over time. It is a constant battle , but try to keep fighting . take care x
LyLy janet71271
Posted
Hi Janet,
Living with CFS for 21 years is a very long time. You have my respect. I've only been dealing with it for a year and it has been rough. I had to quit my job as I was too exhsusted. I'm pretty much housebound and when my fatigue takes a dive it's bed bound for me.
It has been pretty hard for the kids to adjust to my illness but they are getting used to it. I often wonder if I truly have CFS as most had some kind if viral type of infection before getting CFS. I never had any infection just started getting dizzy one day and felt flu like symptoms but the flu never came.
You're right about supplements they don't really do much. My biggest fear is that I will have CFS for life. Hearing your story and knowing the reality of not recovering but adapting to CFS puts things in perspective.
You are a warrior because CFS wreaks havoc not only in our life but dysregulates our bodies, puts it out of balance and make us unwell. I'm learning as I go and taking as much advice from others who has lived with CFS.
Thank you for sharing your story and insight. I wish you well. Take care.
janet71271 LyLy
Posted
It must be really hard having children to care for with this illness. I know others in the same position . I always take my hat off to them. As I now do you. Children are very adaptable to things though .
I do know others who did not have any obvious infections or illness prior to their CFS diagnosis .the real cause of it is not known . hence why research is very important . A DR Betty dowsett years ago believed ME was polio without the paralysis . Caused by the same or similar virus. Some think it might be a virus that lies dormant in the body and is activated by things like stress . I have read some people say they became ill after an immunization and it developed into CFS.
janet71271
Posted
Is vital other things are eliminated. A friend of mine was diagnosed with ME a few years ago but more recently was diagnosed with Addison's disease. Many of the symptoms overlap.
elaine62759 LyLy
Posted
Hi Taro
?I've had ME/CFS for over 20 years initially caused by glandular fever and was virtually housebound for the first year but you can improve from this. It just takes time and patience. I now have good and bad days but on a good day can walk my dog for an hour and go out to shops and meet friends. On bad days I need to rest to get my energy levels back up again.
?The things I've found most helpful are pacing, healthy diet (sweet potatoes, oats, and smoothies with natural yoghurt, honey and berries in particular), listening to guided meditation tracks, walking (started off only able to walk for about 5 minutes but very slowly managed to build up) and gentle yoga stretches which I learned at a remedial yoga class. I also take a multivitamin supplement and started taking a Linwoods flaxseed, nut and co-enzyme Q10 supplement about a month ago which I feel has definitely helped as my brain fog isn't nearly as bad and I seem to have more stamina and be able to do things for a bit longer.
?People can get better and improve with CFS so don't give up hope. Don't feel like you are a burden to your family as it's not your fault you are ill. Try and be honest with them about how you feel and let them know how grateful you are for their support.
Hope things improve for you soon.
LyLy elaine62759
Posted
Thanks Elaine, I am glad you have gotten better from CFS. I was wondering do you get headpressure with your brain fog? My headpressure nevers seems to go away. Being fatigue isn't all the symptoms that people with CFS have, as I have so many other symptoms that makes the fatigue worse.
Besides the fatigue, do the other symptoms eventually get better or go away? My diet has changed I no longer eat bread, process food, fast food or junkfood. Just homecooked meals. I excersise when I can which hasn't been often since the energy isn't there.
I keep telling myself my body is on vacation, just rest as long as it takes to get better. Thank you for taking the time to share your story and insight. I wish you the best. Take care.
elaine62759 LyLy
Posted
I haven't totally recovered from the ME/CFS but have improved a lot from when I had it originally. You get 3 forms of it - mild, moderate and severe. I've gone from severe to moderate. I had to give up my job but am thankful I'm able to normal things some of the time.
?Apart from the fatigue I get muscle pain and numbness in parts of my body (which only appears when I've overdone it) and the brain fog. I also get pressure in my head (feels a bit like wearing a really tight hat like the blood isn't flowing properly). I find lying with my feet raised above my head can help when I get this.
?It's important to try and have a positive attitude with this illness and focus on what you can do rather than what you can't do. I also find keeping a diary useful so I can see which sort of things bring on a relapse and try avoid doing the same things again if I can.
?Instead of pushing yourself to do things listen to your body and rest when you need to!