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ayone ever get better after being very sick?

Discussion in 'General Symptoms' started by hurtingallthetimet, Mar 5, 2012.

  1. hurtingallthetimet

    hurtingallthetimet Senior Member

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    this has probably been asked so sorry to repeat...memory not that great...but wondering has anyone got any positive stories about getting better after being so ill?

    i keep getting more and more ill...have went through and still in at times the angry greiving stage and sad and depressed about old healther happier times...but was wondering do some get better?

    im at my most ill i think....having to stay in house more...cant get shopping like i use too even months ago...can go on walks off and on and its not often and cant do it without morphine...laying down more and more...should i just except this is as good as it gets? or still have hope for to get better? id brought up some old memorys about posting on here or other support about lowest time in life was realizing i wasnt getting better...i wasnt getting answers or any hope...and i had to quit job...more than anything i love to be able to provide for my family to help....i grew up kinda without...and it always meant alot..wasnt rich but i enjoyed getting simple things like pizza or mcdonalds or take kids to a movie or park etc...then i felt like such a faliure...in so many ways...

    should i let go of the hope and move on? or as i said is this as good as it gets? as bad as the socail anxiety is id love to met a good wonderful kind friend with same illness to just watch tv with me...or to talk some....bbut i dont know where to met people near me and honestly not sure if the social anxiety would let me...sigh...just tired as usual..and just wondering if things do get better
     
  2. SickOfSickness

    SickOfSickness Senior Member

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    I know how you feel about all the social things you said. I want it but it's tiring to try and find.
     
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Hurting,

    Your post is very touching. I'm so sorry for what you are going through. Many people do stay the same or slowly get worse without treatment. But some do get better with treatment. Cort has asked for stories of those who have gotten or are getting better. I'm sure he will highlight these stories.

    I am one of those who has gotten better and there are quite a few others on this forum who have also gotten better. When you say, "Is this is good as it gets?" the answer doesn't have to be yes. But most people who are getting better are getting treatment from doctors who have a lot of experience with ME and other chronic diseases.

    This is not an easy disease to treat. It is very complex and a doctor needs to have a lot of knowledge and experience to help patients. I hope you can find such a doctor.

    If you add your city to your profile here, you might be able to find others near you who share this illness. It does help to have this kind of social support.

    With very best wishes,
    Sushi
     
  4. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I got better after having a major exacerbation about 2.5 years ago. I found a good Dr and got lots of ideas for treatment from this website.

    GG
     
  5. lookinglass

    lookinglass

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    Oh please dont give up on yourself! I was diagnosed 4 years ago and had intensive B12 and magnesium injections daily for one year and then it tailed off during next year. That was via an enlightened doctor who had suffered M.E. himself so knew all about it. he told me it might last a year. Then it became 4 years but...it is on the wane! I started to get longer gaps between the bad bouts. I began to get less intensity when I had the bad days. I learnt to pace myself. I learnt to "bank" my energy. I got great medication for the horrendous nausea (Motilium 10mg) which worked. I constantly trawled the internet for info (although not the forums as they depressed me at the time!) and to reassure myself that I wasnt dying, (it was normal to feel like you were!) Low blood pressure, pots, arrythmia, feeling faint, were all well known symptoms. IBS was a problem til I found a great recipe book by Heather van Voren. What I am saying I think is that one learns to accept ME but also one learns it is not life threatening but it can be frightening but there is support out there, there is great help, there are kind friends who know someone else like you, your family is invaluable and precious as they bear the burden and dont complain, they get you through those depression days (another symptom, it is a neurological disease) and they relieve anxiety. Above all else, knowledge is power! And it is NOT CANCER!! Be grateful for that. Hey so we get a chronic very unpleasant disease with some far worse than others on a sliding scale, and I wasnt one of the worst and my heart goes out to all who are far worse. But you will survive, trust me. You will get through it, in your own unique way. Always hang in there and believe you will get better. I did! I get bad days still but nothing like they used to be and maybe it will always hang around in my system but hey, I can cope with it now. Heres my hand, and hers a hug! Hold on. xx
     
  6. Jemal

    Jemal Senior Member

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    Very sorry to hear about your situation. I do have the feeling my health is gradually improving since I got sick (and I had a very bad time at first). I am not under treatment of any doctors right now and the only things I am doing:

    - Cutting a lot of sugar from my diet
    - Taking large amounts of B12
    - Taking Q10
    - Taking Ibuprofen (daily)

    The improvement has been very slow, but it's noticable over a period of months. What's improving is the amount of fatigue and brainfog I experience. A lot of the other symptoms are still there, like the joint pain, pots, headaches, etc. At the rate this is going I don't think I will ever be fully healthy. The fatigue and brainfog were the most crushing for me however and now that they are gradually improving, I can function a lot better. I am even able to work about 30 hours a week again, which was a huge step for me as you can imagine.

    So I still have many symptoms and limits, but I do feel I am improving.

    Hoping for a treatment for all of us...
     
  7. justy

    justy Senior Member

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    Hi - yes many do get better! But i agree with the above posters that you need to do somethings to get better - it is rarely spontaneous, and pushing onwards in the way that you have been doing over the past few months will make it worse (sorry not being harsh - i really want to help!)

    On the other hand, i dont know if we can be cured. This is my experience - i first got sick 17 years ago and was very ill for about 2 years with only a couple of months bedbound. I didnt do anyhting to recover, but gradually got a lot better until after about 4 years from onset i was more or less functioning normally - no anxiety, no infections, sleep ok etc. I thought i was cured. I wasnt. I then spent about 8 0r 9 years functioning high (not work and kids tho) but all the time i kept going to the doctors - i had stomach problems, hormonal type problems, felt generally unwell all the time, every time i did vigorous exrecise i thought i was going to die. Couldnt get fit or increase stamina. I was undiagnosed all this time.
    4 years ago i was at my fittest i have ever been - i was working 2 days a week as a gardener (very physical) working hard on my land as well as voluntary work and 4 kids. I caught measles, then i had pneumonia, then i had pleurisy, then i had to have an operation on my cervix, 2 days after thr op i still couldnt get out of bed. I then became the sickest i have ever been - at about a 2-3 for the next 2/3 years. Improvements started coming about a year ago when i started taking advice to pace and take supplements seriously. I saw Dr Myhill in the uk whose advice has helped me a lot (some hasnt, some i couldnt tolerate)

    The most important thing her and her other patients told me was about pacing and rest. You absolutely have to rest, rest, rest ALL THE TIME until you start to feel a bit better. This meant for me going back to bed for almost 6 months, doing much much much less than i thought i could, stopping any activity the moment i started to feel symptoms again. When you feel better at rest you can graduall try a bit more. If you still feel ok fine, stick at this level for along while. Increase again, see how you feel. Using this method i am now at about a 5, with days at 6 or even 7. When io crash it doesnt last so long (2 weeks max, normally a few days) i now really know which symptoms spell bad news and which will quickly go away.
    This approach really does help to stabilise, and then you can build from there - you need to give your body the space and time to heal.
    This approach takes time - at first i felt much worse when resting - this lasted a couple of months. I just gave into it and stopped trying to go out etc.
    Aside from this i have taken supplements with some success -
    Vit C
    Magnesium.
    CoQ10
    Selenium
    Managanese

    I also am a massive fan of B12 injections - i self inject 300mcg a day of Methyl B12 and it has been a real life savr and taken me up to the next level.

    I also would love to have an M.E buddy to hang out with - i understnad how you feel. Sending lots of hugs.
    Justyxx
     
  8. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I have imprioved so much from CFS that it is not much of a problem. I now working to heal from the Autonomic Neuropathy (POTS) that started three years ago. The nerves in the body actually have to be regernerated and that has been a tough battle. I have a list of my supplements below, A LOT of them since my doctor is treating my CFS and POTS. I am doing very well now from being so sick. I am thankful and I hope you find good doctors and supplements. We have worked hard on the mitochondria, immune system, diet, etc.

    http://forums.phoenixrising.me/showthread.php?15440-Sally-s-supplements
     
  9. Ocean

    Ocean Senior Member

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    Hurtingallthetime,

    I am doing poorly too so I can't give any input in that area, although I relate to your struggles and share many of them.

    As far as keeping hope or not, my approach is expect the worst, but hope for the best. I think accepting that we may not improve and we may even get worse is important in helping to accept the current reality and live with it. I think not losing hope for improvement is important too. For me accepting how today is and not dwelling too much on what I can't do or how things used to be helps.

    As far as physical improvement, I started a thread on this topic too a while back. When I get a chance I'll try to find it and post the link here in case it's useful to you. When I feel better, I will come back and read the replies here more carefully too.


    GGingues,

    What treatments did you use to improve once you found your doctor?
     
    taniaaust1 likes this.
  10. lizw118

    lizw118 Senior Member

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    I am much better than I was three years ago, when I had a CFS relapse due to some changes in my thyroid and adrenal stuff (Initial onset was from a virus years ago, and it has come and go since then). I was really bad for at least a year after the relapse and very slowly improved with many treatments. Like a lot of other people here, I am taking B12 5000 per day and shots every other day. I am also taking many other antioxidant supplements. Acupuncture three times a week at a community acupuncture center has helped immensely.
    I was on very high doses of both adrenal and thyroid medicine and I have been able to cut back to very low doses now. Apple cider vinegar has also helped me.
    For me it has been many small steps leading to a general healing. There have been a few slightly dramatic gains here and there. but mostly it has been slow and steady progress.
    Hang in there and good luck
    Liz
     
  11. Sparrow

    Sparrow Senior Member

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    Hang in there. There is hope for us all. Truly.

    Sorry for the long post to follow - I know they're often hard to read. I wanted to share as much as I could, though, in case it helps.

    I'm far from healthy right now, but I am light years away from where I was ten months ago. And many of the really scary symptoms are gone completely. So I still need to take it easy on the mental activities, and can't exert myself much, but while I'm lying there living my restricted life, I feel human again rather than like an ill, painful, fuzzy, short-of-breath, ready-to-explode lump. And so long as I take it easy, I continue to feel human.

    Some key things that helped me, in case it is useful. This is the wisdom I've gained over the last year since hitting bottom, and the things I wish someone had been able to tell me sooner:

    1) Do less, rest more (!!!). ...And even what used to be minimal activities count. Everything you do counts, as it all takes energy (even watching TV, reading, sitting up, eating, etc.). It was hard to tell when I was so sick, because I felt so awful all the time regardless of what I did, but now I can see vividly the effects of my activities. It will likely be a very hard transition, and may involve some mourning at the loss of your former life, but I very strongly believe that if you can come to terms with temporarily putting your life on hold to really focus on getting better, that will make a HUGE difference in the long run, and in your eventual prognosis. By nature, we tend to try to live right to the limits of what we are capable of, but that doesn't leave extra energy for your body to use to heal (and can make you worse as well if you overdo it). The down times where you feel most comfortable will be the times you're improving most. So if you rarely get those times, your overall condition is likely to worsen. I read an ME specialist who said rest until you feel good resting. Then slowly, slowly do tiny bits more and more as you continue to improve (so long as you don't start triggering more symptoms again). In my experience, any activity that wipes you out or that requires recovery is WAY too much for you. You may still choose to push the limits a tiny bit if it's really important to you, but save it for things that are REALLY important, don't try to do significantly more than what you can already handle comfortably, and don't do it more than once a month or less. I've found that the up and down waves of functioning only happen when I've been pushing too hard. If I'm careful to stay within my limits (however frustrating those may have initially been), my condition is actually relatively stable and what I can and can't do is pretty predictable at any given time.

    2) Try to come to terms with having an illness, and all of the unfairness involved in that. That means that your life may not look the way you expected it would. It may mean that you won't be doing things the way you thought you would. And that can be a brutal thing to come to terms with. I know for me, it involved a lot of tears and some pretty textbook trips through the five stages of grieving (denial, anger, etc.). But it's helped a lot overall. If you can give up trying to hold onto what you had, and the expectation that you should still be able to do certain things (driving, running errands, etc.), it is much easier to work on getting as much improvement and as much quality of life as possible out of what you have now. So long as you are expecting to be able to run errands, you will be frustrated and/or feeling bad that you can't. If you expect you can't do that now as a regular part of your life, you can begin to be happy and excited once in a while if you're able to do it anyway. As someone else said, I would plan for the worst, but hope for an eventual remission (though with the knowledge that it could be a long time away).

    3) Don't measure your health compared to what you could do when you were "normal". You'll go mad. Always measure from your lowest point and compare to that. If you're still sliding down instead of up, you probably really need to change how much you're trying to do (and/or try some treatment interventions) until you find an activity level that allows you to start heading up again. If you're heading up, celebrate all of the things you can do again that were missing for a while. Really, it's amazing how quickly you can adjust and come to terms with even something so difficult when you make a habit of viewing it that way. People are frighteningly resilient that way.

    4) Not all supplements are created equal, and with a few exceptions you seem to get what you pay for. Professional brands (e.g. Douglas Labs, AOR, Metagenics, Genestra, etc.) are sometimes WAY more effective. Noticeably more effective. Effective enough in some cases that you could take less and still get way more benefit. (obviously there are probably some exceptions to this, but I've been shocked by the difference with some products). Also that some brands seem to work better for some people, so if one doesn't work out well for you it might be worth shopping around a bit to confirm whether it's the supplement or the brand that's the problem.

    4) No symptom is "just a part of the illness" or something that you have to live with. Every single individual symptom comes from somewhere. It has a cause. And consequently, in many cases there are things that can be done to fix them. Some are much harder to figure out than others, and some are much harder to treat than others, but if you can figure out where a symptom comes from, chances are you can at least reduce it. Pay attention to activities, body positions, foods and food groups, etc. Often there are things just in that daily stuff that can have a significant impact. There may be a lot of trial and error and experimenting involved here, but it's well worth it if you can be significantly more comfortable.

    5) Do not expect doctors to be informed about this illness unless they are specialists with ME in particular. And do not expect that uninformed doctors will be able/motivated/willing to investigate, learn, or go against the norm to help you (which sounds harsh, but has proven true over and over. Those willing are rare and should be treasured. Those who aren't don't usually have any malice, they just sincerely don't know how to help). In many cases, they may unintentionally feed you outdated or inaccurate information or suggest medications that can even make you worse. It pays to do your own research on their suggestions rather than trusting them implicitly in this. That said, there are some ME specialists out there in the world, and you can learn tons from them. Either with a visit you need to travel for, or by looking at their treatment plans online (on their sites or on this forum). Educating yourself as much as possible (without triggering backslides by overdoing it) can be extremely helpful. If you can't get to an informed doctor, you will likely be your own best resource going forward.

    6) I feel strongly that supplements and medications can be extremely helpful, though in some cases it seems to be different ones for different people so you may have to let your individual symptoms guide you. And we do tend to be sensitive, so it pays to go slowly and not to change more than one thing at once if possible, so you can tell better if something isn't agreeing with you (though for me, usually I get signs pretty quick - a few days between adding a new supplement is often enough to tell if one is a poor choice for me). I don't think I can list everything I've tried (too long a list for right now), but I will say that methyl B12 and Dibencozide seemed helpful for me (though be careful about dose and other factors you may need at the same time - see methylation protocols on this site), as did licorice root combined with lots of water and increased salt (I had very low blood pressure and, I suspect, low blood volume). Other things of particular note are antioxidants, magnesium, and immune modulators/antivirals.

    Good luck with everything. Hang in there. I really do believe that there really is something better on the other side if you're willing to do what it takes to get there (though it can be a difficult, frustrating, and confusing journey. I know it can. Keep at it.). Many hugs to you. I know it's been brutally hard for you recently. It can get better.
     
  12. Ocean

    Ocean Senior Member

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  13. hurtingallthetimet

    hurtingallthetimet Senior Member

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    thanks everyone for the great replies and support.... i apprecaite each and every reply...everyone on here is so supportive and kind....it does give hope to know that others have felt better...even if its just a few days...so much great advice and ideas...

    sparrow i think 2 and 4 would be the hardest for me to do...but i will try..all of your tips were great and im sure will help alot...

    ocean thanks for the thread very nice of you to go through the trouble of looking it up...im still trying to learn my way around here and sometimes its like im finding my way through the dark...not the best memory and that doesnt help with anything tech
     
  14. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I did a lot of things differently. I started LDN, high doses of Vitamin D, C. Found a good med so I sleep and stay down for hours, I was also found to have obstructive sleep apnea, so use a "CPAP" and had my Dr prescribe oxygen.

    I am also on B vitamin complex prescribed by my Dr. Been on Thyroid meds for years now also. I think my Dr does something similar to the methylation, but not positive. Take lots of magnesium malate now also. Probably forgetting some things here?

    I did lifestyle changes: Meditation, Gentle yoga, no caffeine or alcohol, recently started having a drink here and there.

    GG

    PS Feel free to PM me, I am not good about following threads, especially if they get lengthy!
     
  15. taniaaust1

    taniaaust1

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    Yes it is possible to get better and recover from this.

    After being about a 1 on many of those CFS scales (I was bedridden and unable to care for myself for 9mths and quite a few years housebound after that).. after a long slow process of becoming weller, I had a "remission" from this illness or what may of been a full recovery if things didnt go haywire again for me.

    So stay hopeful.

    The one thing I believe helped me slowly become weller was having a full acceptance of just how ill I was. So hence I was kind to myself and stopped trying to push myself once this illness took hold. Anyone who hasnt got this acceptance of the illness (its not giving up but rather facing the reality of the situation) will be tending to push themselves too much.

    Acceptance of the illness will also cause one to purposely change ones life. You cant compare yourself to how you used to be. Illness acceptance requires building a "new" life for oneself eg new hobbies, different friendship groups etc etc based on whatever ones capabilities are etc

    I also wonder if the fact that I couldnt get pain killers stopped me too from pushing myself as much as I would of done if that had been helped. Maybe the fact that no doctors did anything to treat me, actually aided in my recovery due to that fact. I was completely bedridden by my symptoms.

    I did aggressive rest therapy even after symptoms were allowing me to be able to get out of bed. I did that for years and over time got weller and weller until I was fully recovered for several years (unfortuantely something happened which caused me to crash thou back into this whole illness and I havent been able to recover like before).

    I see counselling may be a very helpful thing for our illness if one has the right counsellor. (learning the need to pace well, let go of the past and develop a different life, learning to deal with the pressure others put on us and saying "no I cant do that today" to people etc etc)
     
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  16. Ocean

    Ocean Senior Member

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    Thank you GG!
     
  17. hurtingallthetimet

    hurtingallthetimet Senior Member

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  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    My mother probably had ME, though it was before the time that she could be diagnosed. I do remember her lying down much of the time and my brother and I did do a lot of the family chores. But I never thought it was abnormal or a burden to me as a child. I think many kids just accept things as they are and don't think too much about them.

    For me, it was just part of my role in the family to take on more tasks than other kids. I only began to think about it as an adult--and then I realized that my Mom was sick.

    "Aggressive resting" is very important, at least at a certain stage of illness--in order to get better. My doctor tells me never to go over my energy limits to the extent that I get "payback." Yet, for many patients (particularly in the early years of being ill) cycling between doing too much and payback is a way of life. Every "payback" is potentially going to make you worse--and that will not help with your worries about your kids well-being either.

    We all need to let go of guilt about what we can or cannot do. It is just "reality" for the moment and the guilt makes healing more difficult.

    Best wishes,
    Sushi
     
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  19. hurtingallthetimet

    hurtingallthetimet Senior Member

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    does aggressive rest therapy have more steps to it other than the obvious resting? im going to look into it..as i said never heard of it but if it has helped others thats great...

    ive been told to exercise..to force myself by doctors before..i dont understand it...i have a good doctor i like alot seems very knowledgeable that doesnt push exercise on me like the other doctors..i know its important but as im sure all of you know its just physically impossible..its like telling a fish to walk around out of water or something....ive walked a few walks with my daughter since on stronger pain medication..i am sedated with it..i feel sore though and worse afterwards...just wondering where the exercising part helps others?
     
  20. Ocean

    Ocean Senior Member

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    Hurtingallthetime, Don't you also have fibromyalgia too? Sorry I can't remember for sure. I think for people with fibro certain types of exercise often does help. But if you have both conditions, then obviously that puts a whole new angle on the exercise issue since I think most of us agree that exercise with CFS can be harmful. Some people can do certain types of exercise, but one has to be very careful in my opinion. I think some simple stretching or exercise you can do for a very short period while laying down, that kind of thing is okay for some, but if something is making you worse every time you do it, I would stop doing it.
     

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