Has anyone on here gotten better? How?

Brain and nerves
1

Thank you all for everything you share.  This site has meant I great deal to me, since I have found through it that there are other people who understand where I am coming from.  I thank God for this resource.

 I am almost 50 and became seriously ill with CFS exactly two years ago.  This whole time  I have been beleiving that there is NO WAY that this can be my life. In other words, I have definitely not accepted CFS as an ongoing part of my life.  Friends and family don't help since they say things that indicate "So, when are you going to get better".   When I have made myself face a reality of  living this way for the next 25 years, I have just crumpled or been angry. So.............. I have tried CFS specialists who claim to be able to cure it.  This has been at great financial  cost for my family, of course.  I'm in the US, by the way.  I have received some help, but no cure.

I'm just now barely beginning to accept that maybe I can make living with CFS my new life.  Tears start coming, even as I write that..  I don't want this for my new life. I know that this will sound horrible to some people who don't understand, but, since I'm not scared of death, I would rather die than spend the next 25 years physically miserable and not much of a contributor.  But , maybe I have to accept it, and figure out how I can contribute just like I am.

I have a question, please, has anyone out there been cured?  Also, do you know people who have been cured? Have specialists helped with cures? Should I truly just  accept?  And If I do have to accept living like this, then I want lots of purpose in my life like I use to have.  How have you all found purpose with a body that doesn't function well?  

I hope I don't sound like a basket case!

 

2

HI Dawn,  I'm new here, and I'm wondering the same thing.  For me, today, just sitting up and being on the computer is tiring.  I'm hoping to hear that some have been cured, or that their life has at least been improved. 

I can't always stay home, and I never know, when I wake up in the morning, whether I'll be able to go and do what I need to do. Other times I go, but it's an effort to walk around and get even minor things accomplished.  I know how you feel.

 

3

Hi, Dawn-

Thanks so much for writing this.  What you say expresses how I feel on many days.  You're not a basket case.  =)  I think all of the feelings you talk about are normal with this illness and other chronic illnesses.

I've lived with CFS for about 27 years, but I didn't know it and it didn't become disabling until I had a major surgery 11 years ago.  Even then, it took me another 2 years to figure it out.  I've also spent a lot of money and invested a lot of hope in CFS practitioners.  I'm seeing someone new next week who has CFS herself.  She wrote on her website that there is no cure, and I felt despair.  But some people do get back to a higher level of functioning, even if they're not cured.  

I've fought, and still resist, thinking this is how the rest of my life will be, and not sure how I'll get through.  I use Mindfulness tools and am considering Cognitive Behavioural Therapy to cope.  And medication.  Those who do this without medication amaze me.

I think we have to redefine purpose.  Work used to be where I had meaning.  Now, for me, it gets very basic.  Can I love the people in my life, be a good friend in the way I'm able, learn something, contribute in ways such as this Forum, be compassionate to myself and others?  All of this is a work in progress for me.  

Living with the unknown can be maddening.  I allow myself to feel sad, and then let the feelings move through.  One counselor of mine said, "Say 'yes' to what is."  That's acceptance.  

I DO know that resistance, depression, etc. causes stress in the mind and in the body.  Stress inhibits the healing process.  So any healthy way I can find to relax, rest and let go, whilst seeking out healing help, is my goal.

I will post here if I find anything that helps.  Keep communicating!

 

4

Hi Dawn,

Firstly, you are a brave person to wear your heart on your sleeve and say what you have said...I know from others I have spoken to that this is how they feel too. Please don't give up though, even though you are feeling quite low at the moment take each day as it comes and concentrate on what you can achieve...little things, for me its just the fact that some days I can actually sit on my balcony and watch the river boats go by. You see I am virtually housebound, I had to give up my job as an English teacher in February and can no longer drive or walk outside. That has hit me hard. Yes I do get the comments such as 'you look ok maybe you need to take some exercise,' but now I just ignore them because people don't understand because CFS(ME) is by and large an invisible disability. Yes it is a disability and I object to it being called Chronic Fatigue Syndrome because I am not just tired/fatigued, I am in constant pain and at times greatly anxious and depressed. It is every bit as debilitating as the majority of disabilites because it is so broad in spectrum and so life changing.

You are not a basket case you are someone in need of care and attention, you are a vital humanbeing who deserves to live a life with dignity, quality and respect. No you may never get back your previous health status but you will find things to do that make you feel valuable and vital...just work at it. Me I'm going to write a novel or something along those lines...due to fatigue it may take years but I'll do it...find your 'thing' and aim for it...you can do it and you will. Just take heart you are not alone. Good luck and hang in there....

5

Hi Millie,

Thank you for your words of encouragement and wisdom.  

Write that novel!  Did you know that the lady who wrote Unbroken and Seabisut has this condition.  I was amazed at her accomplishment.

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Hi Nannete,

You said some things that I really want to remember as I begin to try to accept that I am probably going to have to live with this new normal. I want to remember that resentful resistance will cause stress, which inhibits the healing process.  And I need to be mindful of how there is meaning in loving others without having to accomplish  a lot of actions.  My life use to be so focused on accomplishing.  Thank you for taking the time to write!

7

I'm afraid I haven't found a cure yet, but I can report that I have found my purpose in life through studying, first by correspondence courses and lately with on-line courses. These can be done at my own pace - that is according to how I feel, and it gives me a great sense of achievement. I also did courses at a local university, who were very understanding of my difficulties with extension to assignments and a classmate recording lectures when I was housebound. I started with ME/CFS over thirty years ago, but it hasn't been constantly at its worst during that time, i've had better phases. I managed to work part-time for 6 years in 2000-2006, but this contrasts with the difficult times when I could hardly walk. I just want to reassure you that life with CFS is possible, if you find your own purpose fitting with your interests, capabilities and limitations. Some people say that highly motivated people are more prone to develop CFS because they push themselves, so you need to find new channels for your efforts. I wish you the best. Pixie xx

8

Good for you, Millie!  I, too, was  a teacher. I taught English and English as a Second Language t for thirty-one years, then retired. Luckily, I was able to retire before the CFS got worse. 

If you were able to wade through my very long post to Dawn, you'll notice that I have multiple new challenges to deal with. I try to get a massage of my neck and back (for the arthritis) each week, but some days I just can't go. I have to drive about 15 miles to town for the massage, and often feel like a limp dishrag just walking into the place where my massage therapist works.  After the massage, I often feel tired and groggy, as do many who get massages.  So  I don't usually get much done on those days.

 I also do as much sewing as my  body lets me do, maybe a few hours a day , which I split into about half hour segments, then resting in between. I have two online shops at etsy, and  I also sell at a Saturday farmers and craft market (handsewn items like aprons and kids hand puppets,and catnip filled toys for cats. My husband and friends grow the catnip for me. If it weren't for my husband, I couldn't do any selling. I can't lift much (too tired) and can't look up or down much (feel lightheaded and occasionally get vertigo), so my husband does that. Then he leaves me there while hes at work, and he comes back four hours later to help me take things down and we drive home.  I refuse to give up being a vendor at the market. I love the people, and I can sit down. That, my shops online,  plus occasional babysitting with my 9- year- old grandson are about all I can manage these days. I wish I had the energy of my friends and husband, but most days I alternate between resting and doing things where I can sit down. Like you, Millie, I think we need to feel valuable and vital. But, it takes a long time for us to accomplish things because of fatigue, palpitations, and other problems, doesn't it?  All we can do is try to get the most  enjoyment out of every day. Sometimes that's hard,  though. Wish I could take something more for anxiety and the palps, but beta blockers and more  anxiety meds aren't for me.  I've tried deep breathing, but it doesn't seem to help. Sometmes a cup of chamomile tea does, though, at least for awhile.

Keep on keeping on.  Maybe one of these days we'll find some help. In the meantime, this forum has great people, and it means a lot to me.  

 

9

That's really neat Pixie!  I have to admit that I hope that someday I can have one of those better periods, such as you had between 2000-2006.  But, that is so great that you are able to educate youself at a doable pace during other times.  Thanks for sharing!

10

Good question, same answer here

But I feel pacing and routine really helps(or isn't as painfull), that's really eating sleeping everything down to medication timing too

Hope that helps a little😌

11

Hi, Dawn--

I do know people who have gotten much much better. For instance, one friend can now lead a normal life, even climbing all over her hillside to do gardening and pull weeds. Another friend also went from terrible to normal. Another note of hope: a lot of research is now being done, all over the world, by some of the best and brightest. At Stanford University, a leading geneticist, Ron Davis, is researching ME/CFS, and he's extremely motivated--his son, Whitney, is very ill with this disease. At the University of California at San Diego, a major research paper was just published, that will move the understanding of ME/CFS forward. I do understand how very hard it is to accept and live with this illness. My struggle has been how to feel good mentally when my body is so sick physically. Also, how can I maintain hope for improvement while still accepting that I'm so ill right now? I've pretty much found that I can be accepting and hopeful at the same time, though it is sometimes walking a very thin line. Also, my definition of purpose has changed, by necessity. Before this illness, my purpose in life was largely driven by my satisfaction in my career. I had to give up that career. Now I find happiness in everyday things, and try to live in the moment. I also try to give back to the ME/CFS community by posting on this forum. I would be very wary of any specialist who says they can cure this illness. I've read so much about ME/CFS, including the state of current research, and I've never read about a cure. There is, however, treatment for some of the symptoms. For example, I had racing heart problems, which was successfully treated by a beta blocker. There are many people out there who are looking to take our money, taking advantage of the fact that there is no known cure for ME/CFS. I'll never give up hope. But in the meantime, I'll focus on whatever it is that I can do, rather than on what I can't do.

12

Excellent points, Jackie!

 

13

Hi Dawn,

I know of 3 people who have got better from this. One who still has symptoms but can work, one who thoroughly believed it was through drinking aloe vera juice and one who had it for a couple of years without diagnosis. My own story s mine fluctuates and I too have wondered about where is my life heading with this awful condition. Knowing people recover is inspiring.

Be gentle with yourself and as hard as it is, ignore those that doubt its severity.

Best wishes from across the sea

B

14

Hi Dawn, first of all, let me say how sorry I am that you are sick. I would not wish this on anyone. I have had ME/CFS for about 4 years now and have had some improvement. But, it has been slow. The only reason that I am still going is that my father had CFS when he was about my age and he was bedridden for a year. He never changed out of pajamas and slept almost the entire time except to eat and do very basic hygiene. He couldn't talk to people except for just a very few words, nor did he watch television or conduct any sort of business. He said it took him about five years to get over it completely, but he did and even went back to work. His story gives me hope, as I hope it will you as well. He did not take any meds but he says he feels like the long periods of sleep let his body heal. I know if I can get 10 or 11 hours of sleep per day I feel better and can do a few things like get dressed or shower or even do the dishes sitting in a chair. I, like my father, was bed ridden for about a year. I have been recovering now for several months. I, too, feel like my progress hinges on sleep and the resolution of some vitamin deficiencies and the elimination of some foods that were causing nasty allergic reactions. I read a story last night that gave me some hope too. Dr.Davis, a renowned scientist, in California, has started, or will start soon, research into ME/CFS to find help for his son. His son is completely bedridden and cannot talk or eat or respond. I really feel like this doctor has the motivation to find help for his son and the rest of us, so just hold on, I feel like help is coming. He has found a gene mutation in his son that show up in a large percentage of other ME/CFS patients. I am so very hopeful hearing this news, and I hope you will be too. My advice right now would be to have food allergy testing, make sure you don't have any vitamin deficiencies and get as much sleep as you can. Hopefully, in the near future, we will get some relief. Until then, just take care of yourself and try to remain positive and hopeful.

Best wishes, Diana

15

Hi Jackie, I just read your post and it is excellent. I, too, am encouraged by Dr. Davis joining the fight to try and find help for his son, as well as the rest of us. I just wanted to tell you about my experience with a racing heart. Mine did that for about 35 years until I found that food allergies were causing it and not a heart problem. I saw about 10 cardiologists over the years and not one said anything about food allergies or getting tested for them. I finally found a Dr. who did just that and I do not have the racing heart anymore or need the beta blockers. I hope this is in some way useful to you. Forgive me if I have posted this to you before...my memory is not what it used to be.

Best wishes, Diana

16

I have had 3 relapses in the last 15 years all triggered by the flu, I was bad for 6 years,2001 to 2007,then two years 2012 to 2014 and I came down with the flu in January this year, I struggle to walk 100 meters,any physical activity is exhausting,tge only thing in the past that has made me better is rest but it takes me years to get better,my problems started at 17, I am 58 now.I spent a,week on the hospital when I was 17,when I was 18 the do good though I had mono but all the tests came back negative,that was,1975,the term CFS was first used in 1988,there was a ground breaking research paper published in August of this year by the university of California,listing the triggers of CFS and what they believe the disease is,they also identified biological marks that they believe will lead to a diagnostic test for CFS.they discover that cells go into a protect hibernation state due to an infection,tge cells fiction at a low metabolic rate which explains the fatigue and exhaustion,i t is an auto immune reaction to an infection,Doctor Davis of Stanford university and director of the OML has already allocated 5 million dollars a year to confirm the research

17

I'm so glad there is research going on.  Amazing.  I wonder whether getting flu shots would also cause a person to have relapses.  I'm unable to have flu shots because I get muscle tingling and feel tired after I have one. Doctor says  I shouldn't get them anymore. So I try to be careful not to be in crowds during flu season, which is difficult.

18

I've had the flu vaccination every year for the last 9 years, and I've not had any flu in that time. I do feel a bit tired and achy for a few days after the injection, like a very mild infection, but it doesn't bother me and it doesn't set off a relapse of the CFS/ME.

19

I've gotten a flu shot every year for the last 15 years. I was diagnosed with ME/CFS over 15 years ago. I've had no ill effects from the shot in all that time. I'm sure everyone is different, though.

20

By the latest research,thet list the triggers,tgere are a lot of viruses and bacterial infections on the list,the triggers are different but the disease is the same,mmy trigger is the flu and I had my worst relapse that lasted 6 years form 2001 to 2007 it started with the worst flu of my life, I did get the flu shot every year and I got better when I stopped getting the flu shot,tgere might be a connection ,so I have gotten the the flu shot since then, I have had 2 relapses triggered by the flu since then, I am really struggling right now it is extremely difficult to walk 10o meters and all physical activity is exhausting