Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
Discuss the article on the Forums.

Who has improved?

Discussion in 'General ME/CFS Discussion' started by Meruem, Sep 8, 2017.

  1. Meruem

    Meruem

    Messages:
    10
    Likes:
    12
    I'm trying not to give up,but after searching so much about CFS it seems that most people remain ill for their whole life.Is that true?What is the percentage of people who improve and even recover?I'm new to this illness(only 4 months) and I'm willing to try everything,but not knowing what's making me ill or how long i'll be ill drives me crazy.

    Which of you have improved and how much?

    What's your CFS story(symptoms,onset,duration,severity etc)?
    What things have you tried and of those things what made you better?
    My activity level is 3-5..I decided not to aim for recovery right now and start by trying to improve first.I think that if I reached 7 in activity level I'll start to feel alive again.Those of you who have done that,make some suggestions I'll be very thankful.
     
    Last edited by a moderator: Sep 8, 2017
  2. *GG*

    *GG* Senior Member

    Messages:
    6,143
    Likes:
    4,738
    Concord, NH
    Me, since you are only 4 months into this, take it as easy as you can. I only started doing research into this illness Years after becoming ill, seems to be suggestions/studies that say take it as easy as you can? Not sure.

    I had a bad crash in 2009, stopped exercising for about 1 year, put on a lot of weight, but was able to keep my job and continue working for another 4 years.

    GG
     
    debored13 likes this.
  3. Cort

    Cort Phoenix Rising Founder

    The best thing I think to do is to pace yourself rigorously, do a good diet, and give yourself time to heal. I have pretty much stayed the same for decades. However, because of $ issues, I haven't tried nearly as much stuff as other people. I haven't even seen an ME/CFS specialist in almost 20 years.

    I do wonder if I'd taken it easier, meditated, really tried harder to slowly heal if it would have made a difference. Unfortunately, I am terrible at taking my own advice - and have generally pushed, pushed, pushed. If I would do it differently I would have focused more on slowing down and healing.

    I'm probably at 5.5 right now.

    Remember, the people on these Forums are those who are trying to get better. Those that got better generally aren't here.
     
    Last edited by a moderator: Sep 8, 2017
    PhoenixDown, MEMum, Oberon and 5 others like this.
  4. Catdev

    Catdev

    Messages:
    5
    Likes:
    38
    Hi Meruem

    I too got ill 4 months ago. I've now recovered (I think).

    My illness started suddenly with no obvious cause. It began with dizziness, then came fatigue and a general feeling of being unwell, like the flu. Along with a myriad of random symptoms and a feeling of being poisoned and electrocuted at the same time! At my worst I was stuck on the sofa for 3 weeks, unable to do anything and feeling ghastly. I had two months off work. My husband and daughters took care of me.

    I had no treatment, and didn't eat particularly well (had no appetite) or take any supplements apart from a multi vitamin. The illness just seemed to run its course. I'm in the UK, where there's no treatment available.

    After 3 months I began to feel better, and after a couple more weeks I was feeling fully recovered. We went on holiday and there I was very active. I returned to work. I was 100% for about 2 weeks. The me cfs already seemed like a distant memory! Then i caught a sore throat from my daughter, and felt unwell again, but not nearly as bad as before. I rested for about 10 days and right now I feel 90% well.

    Now i am very conscious i have to be careful what i do, even if i feel completely well. Only (if and) when I've been well again for a few months will I consider it behind me.

    You certainly can get better. In fact my GP told me that most people with what he called post viral fatigue do. I believed him until I did some Googling! Do you feel you're getting better, worse, the same? My symptoms were so erratic it took some time to see I'd turned the corner. All the very best to you.
     
    ChrisD, MEMum, MeSci and 1 other person like this.
  5. Wonko

    Wonko Senior Member

    Messages:
    1,439
    Likes:
    4,742
    The other side.
    @Catdev

    Why do you think you have M.E.?
     
    Jessie 107, justy and Joh like this.
  6. dadouv47

    dadouv47 Senior Member

    Messages:
    726
    Likes:
    1,791
    Belgium
    After 4 months it's hard to tell if u really have ME. You should really look for every kind of infection with the best tests available (EBV, Lyme etc...) and if you find something treat it.
    I know many persons who thought got ME and were sick for 1 or 2 years max and found some infection and recovered pretty fast (wish I have done tests sooner :()
     
  7. Catdev

    Catdev

    Messages:
    5
    Likes:
    38
    Right now I'm hopeful I don't have ME. I thought I had it because I had many symptoms fitting the diagnostic criteria (including PEM) and my doctor told me I had PVFS, which I discovered was another name for ME.
     
    justy and Wonko like this.
  8. Wonko

    Wonko Senior Member

    Messages:
    1,439
    Likes:
    4,742
    The other side.
    PVFS is also a condition it's own right.

    Let's hope you don't have M.E.
     
  9. godlovesatrier

    godlovesatrier

    Messages:
    15
    Likes:
    16
    Hi Meruem,

    It is frustrating and I sometimes think even worse at the start of this illness as you don't even know what you're dealing with. Firstly if you are only 4 months in you may have been diagnosed with CFS/ME but you may actally be suffering with post viral fatigue which usually lasts 6 months. The first time I had ME symptoms 5 years ago I had a low white blood cell count due to exhaustion and a mild stomach bug but primarily due to over doing it. White blood cells take forever to build up in the body and will cause symptoms such as fatigue, lack of appetite etc. It won't cause pain though, or deep muscle fatigue that you simply can't recover from. I say this just in case your symptoms are the opposite of the full list for ME.

    If that's not the case I found keeping a diary was massively helpful as I am not as bad now as I was when I was first diagnosed with ME. However I fight my body on a regular basis. Simply walking up the stairs is difficult at the moment though not impossible. Keeping a diary is important, you might for example, only be able to walk 10 minutes one day but then a month later you might be able to walk 25. Slowly as the months go by (and yes sadly it is months) you will begin to be able to increase this and your body will recover.

    As others have said however it is incredibly important to rest. For me that doesn't include sleeping as that has no affect, it just means immobilizing myself. Though I have not yet learned how to deal with the anxiety or depression that comes from this sort of lifestyle, immobilizing your body is important, especially for the first 12 months (every experience is different but that was mine).

    Also you may have to concede to yourself that you may never be a seven again. I have not read too many stories of people who ever get back to 100% but maybe someone knows of one on the forum that I'm not aware of. I believe psychologically ME patients generally are hard workers, who may often put themselves before themselves which often means skipping meals and/or working harder or longer than others. This applies to sports too and over doing it. I've found it hard but I have managed to change my personality somewhat to do less and exhaust myself less.

    Good luck with your recovery and keep hope, I have no doubt at all if you keep a diary you will see small improvements and personally I found that to be incredibly useful especially for my mental state.

    I can also recommend taking a good q10 supplement and making sure to get at least 100-180mg of magnesium into your diet through leafy greens like Kale and/or supplements. Both will help with your energy levels.
     
    echobravo likes this.
  10. Joh

    Joh Inactivist

    Messages:
    726
    Likes:
    4,473
    Germany
    Hi @Catdev, really happy for you that you seem to be one of the lucky ones who didn't develop ME/CFS (that is diagnosed after 6 month), but please don't call your story a recovery story from ME/CFS if you talk to people. Stories like this make it so much harder for us to be taken seriously (and as a consequence to get funding and research).
     
    slysaint, Marc_NL, Valentijn and 9 others like this.
  11. satori

    satori

    Messages:
    61
    Likes:
    29
    NJ
    I've recovered substantially over the years, but not 100%. A big part of my recovery was hampered for many years by a lack of technology. The development of various blood, urine and DNA tests helped to pinpoint areas that were dragging me down and focus treatments that addressed those issues and increased my energy. Focusing on addressing these anomalies has yielded more than trying to find an absolute cure. I am hopeful when I see the diagnostic tools and treatments in development, but I think at this point it's still going to require a lot of work on your part. However, the knowledge you are forced to accumulate as you go through this process is very valuable for your personal well being.
     
    Learner1 and Wonko like this.
  12. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,290
    Likes:
    12,034
    U.K
    It certainly is possible to get better. I had a long remission for 9 years to almost normal functioning (I could exercise but had poor stamina, could drink, but not much etc).

    Sadly I relapsed 9 years ago after working too hard, then catching measles which turned into pneumonia then having a minor surgery, and am now severely affected with little chance of recovery or remission again.

    There are a lot of us around who have had long remissions only to succumb again.
     
    MEMum, Marc_NL, Valentijn and 5 others like this.
  13. TenuousGrip

    TenuousGrip Senior Member

    Messages:
    178
    Likes:
    596
    Exactly what I was going to say. The importance of this simply cannot be overstated.

    All the best to you .....
     
    MEMum likes this.
  14. Diwi9

    Diwi9 Senior Member

    Messages:
    517
    Likes:
    1,903
    USA
    Hi @Meruem - I have improved, after a relapse during last summer/fall (I've been sick for 8 years, but was mild before the relapse). I now experience less PEM, and when I do, it is less severe. Cognitive dysfunction, hyper-acuity, and photo-sensitivity were major symptoms, which are now tamped down. My sleep has improved, and I am able to do more socially, although I'm still limited physically. I am not in bed all day, but I still rest. The things that have helped the most other than rest, include: LDN, Equilibrant, Desmopressin, NAC, and an anti-histamine/quercetin protocol for MCAS (greatly reduced brain fog)...plus the regular supplements. Also, going gluten-free.

    Earlier this year, I was a 4, I'm now at least a 6. One caveat is that I have no reason to believe that I cannot get knocked back again. I think @justy described how she went into remission, but later relapsed and declined...we remain vulnerable. My approach has been focussing on 5% improvements, rather than recovery. If you can make gains, and you can stack gains, life can become livable again. I spent Feb-Jul mostly in bed and could not drive. I'm driving again and hoping to return to work part-time in October.

    My best wishes to you. What helped most was reading everything I could on PR, which helped direct me to supplements, medication, and a specialist (I'm am lucky to have access to quality medical care, that is a huge hurdle for many). PR also encouraged me emotionally, especially with guilt about losing work, losing out socially, and resting so much.
     
    Last edited: Sep 8, 2017
    MEMum, justy and Marc_NL like this.
  15. Timaca

    Timaca Senior Member

    Messages:
    645
    Likes:
    306
    I got sick with a sudden onset in the fall of 2003....almost 14 years ago. I declined to the point where, at times, I could not stand up....and certainly could not leave the house.

    Over the years I have gotten much better. And this year has been my best year so far......and of course I hope that continues.

    I do believe in my case that my CFS is infection associated. We've seen it in the labs, and I've seen it in myself personally with the meds I've taken. Both antibiotics and antivirals have helped me. Just recently, in June, I tried to cut my Valtrex dose in half. That did not work. The HSV1 caused me significantly more problems neurologically on the lesser dose, so after 6 weeks, I increased the dose again.

    In addition to antimicrobial medication, I've had to change my diet. It appears that the pathogens set off LOTS of food intolerances in me. LOTS. I can eat rice, sweet potatoes, most vegetables, some fruits (but not berries) and legumes. Just recently I tested buckwheat cereal and that did not work. :( I can eat small amounts of really fresh fish. By fresh, I mean the fish doesn't smell like fish when I bring it home from the store. Today, the fish I bought (even though they said it came in to the store today) smelled just a bit so I froze it for my husband.

    The third thing that has helped me has been Manuka honey. Surprisingly enough.....it does have antimicrobial properties and I think it is helping that way. It is NOT effective against HSV1 though. I will be very interested to see if my labs continue to look better next month when they are drawn again. They seemed to be quite improved in May. Many of the viral titers were lowest ever and my immune function tests were the best ever. And I attribute it to the honey. We've been keeping track of these labs since 2005 so it is pretty impressive to see the change....

    You can check out my Manuka Honey post on my blog. In October I will post a health update. That will include labs if they continue to look good.

    This past week I've had a cold. Even with that cold today I ran errands to 6 different places, did 2 loads of laundry, some cooking, etc and I am fine. Now I'm not perfect, but I feel like my body is healing....and I can only hope that I am. This is the best I've felt in 14 years....and I am grateful. One example, is I've been walking for a 1/2 hour to the bottom of my neighborhood and back up again....something I've not done since becoming ill.....I don't do it every day and haven't done it since getting sick, but I can tell that if I didn't have the cold that I could do it (if that makes sense).

    I will say that stress (emotional type stress) can really drain the energy from me. I recover quickly though, but there is something about that which really takes it out of me....

    I can only hope and pray that we all get better....and I will do that now, for all of us...pray. In the meantime....yes there is hope. I am feeling better. And I say that most gratefully, and to give you hope.

    Best,
     
    Jessie 107 likes this.
  16. Dainty

    Dainty Senior Member

    Messages:
    1,707
    Likes:
    2,200
    Seattle
    I have experienced significant recovery.

    I was:
    • Mostly bedridden (most days could only get up to use the bathroom, sometimes could get my own water too, sometimes not)
    • Extremely sensitive to any daylight, and certain artificial lights
    • Very severe noise sensitivity (e.g. takes days to recover)
    • Severe food sensitivities/allergies/intolerances, to the point of being dangerously underweight
    • Unable to handle the presence of others in my room
    • Unable to carry on a conversation due to neurological difficulties
    • In significant pain all the time
    • Experiencing such severe fatigue I described it as "fatigue so bad it ought to be called pain".
    For anyone familiar with the Canadian Consensus Criteria, my mom (then caregiver) would tell people I matched it "about five times over".

    I am now:
    • Able to work a part-time job, as well as freelance
    • Taking care of myself
    • Pain-free most days
    • A social butterfly at any opportunity
    • Tolerant of daylight and some sun, all light except strobe is safe for me
    • Enjoying a tolerance threshold for loud noises before they cause me problems
    • Able to eat a wide variety of foods
    • Back up to a healthy weight
    • Engaged
    • The happiest I've ever been in my entire life
    The thing that helped me most was a specific form of cranial osteopathy, and lifestyle changes that the treatment pressured me to make. I strongly advise against craniosacral therapy, which is confusing because the names sound very similar. I actually was not doing it for the purpose of improvement - I was done with treatment, I was dying in a couple different ways. It helped relieve symptoms and made it possible for my body to rest, so it was for palliative care only. It ended up doing a heck of a lot more than that, for me.

    This is oversimplifying it tons, but that's the gist of it.

    Others have experienced improvement with other things. Unfortunately there's a lot of "try it and see if it works for you". I tried different things for about 8.5 years of being severe before I found something that helped me.

    I've written out more on my story here if you're interested. Please excuse the mess of the website, I'm working on it!
     
  17. Forbin

    Forbin Senior Member

    Messages:
    952
    Likes:
    4,002
    I don't know. If ME had robbed me of years/decades of my life, I'd want to be involved now, even if I had recovered. The only revenge/restitution anyone who's had this disease is ever going to get is to see it exposed, cured and ended.

    I'd want to be around for that.
     
    Last edited: Sep 8, 2017
  18. Dainty

    Dainty Senior Member

    Messages:
    1,707
    Likes:
    2,200
    Seattle
    For me personally, there are a few factors involved:
    1. I have been formally diagnosed with PTSD regarding the hell I went through over a decade-ish. I have to be careful when/if I reference my story, because it can send me into flashbacks and panic attacks. For years, this kept me away from PR as it was too triggering.
    2. When I do share my story, there are always going to be patients who think I never had CFS/ME in the first place, or that the treatment that primarily helped my recovery was "just a placebo effect". These accusations and insinuations are very difficult to be on the receiving end of. I'm not always up to it.
    3. I already lost about a decade of my life to this illness. That was not by choice. Now I have the chance to have a life. Why would I choose to remain focused on illness when I could just forget it all and be blissfully happy?
    The only thing about #3 is that I am still drawn back time and time again to sharing my story and listening to others'. And it's hard. Sometimes I wish I wasn't. But, as much as I would like to leave it all behind, it's still a part of me. And it freakin' FINDS me even when I'm avoiding it. So I'm still trying to figure out the balance.

    Hopefully I'm not pulling this thread too far off topic by responding to this.
     
    Last edited: Sep 8, 2017
    Gingergrrl, Learner1, pamojja and 2 others like this.
  19. Murph

    Murph :)

    Messages:
    505
    Likes:
    2,603
    I've improved: four times!
    Unfortunately I've got worse four times too.

    If you do the maths on this [worsen, improve; worsen, improve; worsen, improve; worsen, improve] you will see that most recently I've logged an improvement. It's the least major of the improvements I've seen (the last three were basically full remissions) but it's welcome.

    I got sick in 2002 and I've been in more-or-less-remission for about half the time, and a bit broken for about half the time too. I've never not had PEM but the trigger for it got pretty hard to pull at a couple of points there. There was a day I rode my bike 100km ( I used all my tricks and got away without PEM from that)! There've been far more days when I couldn't get out of bed.

    The first three remissions, earlier in my illness when I was younger and healthier, were achieved without really having to try. In retrospect perhaps they came about via diet and rest. This last one has been far more hard-won and pulled me out of a much deeper hole. I credit my most recent improvement to whey (amino acid) supplementation.
     
    Last edited: Sep 9, 2017
    Jennifer J, MEMum, justy and 3 others like this.
  20. gregh286

    gregh286 Senior Member

    Messages:
    594
    Likes:
    822
    Londonderry, Northern Ireland.
    I recovered from 4 to about 8-9.
    Can walk 5 or 6 miles a day no payback but long termers will tell you it can return abruptly.
    4 months is very short time.
     
    ChrisD, Jennifer J, justy and 3 others like this.

See more popular forum discussions.

Share This Page