Do We Ever Get Well?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by greatgran, Jan 11, 2013.

  1. greatgran

    greatgran Member

    After all these years I think I have the answer for me, that is NO... Been to so many doctors, tried so many things have hope then discouragement.. I too have Chronic lyme and have been through the abx, LLMD etc..

    There will be days I think I am getting somewhat better then wham the train hits again.. Getting so depressed, know this isn't good for healing but where do we go from here?

    Many times I wonder how one can feel so bad and still live.. Thinking of working on my mind to accept and deal not sure what to try.. any advice? hugs to all
  2. jaminhealth

    jaminhealth Well-Known Member

    and some here have other issues besides FM and OA....so we just deal with it, some days we feel better, others days not....I keep trying things and I keep getting older too...that isn't in my favor body-wise, wisdom wise yes....

    I always think we could be worse, a lot of us anyway....to me cancer would be much worse to be dealing with, and MS is no walk in the park, pretty bad for many....

    Hang in girl and keep trying and relish those good days....I do. The B vitamins help a lot I believe. My apt looks like a supplement store....but it's OK, it's what I think helps me...

    I've been getting help with acupuncture and then yesterday my rheumy announces she has to raise my copays, as medicare is cutting reimbursements and her overhead keeps going up too... So it's a vicious cycle. I'll probably just go 2 times a month instead of every week as I was....the costs get to be too much for some of us, a lot of us.[This Message was Edited on 01/12/2013]
  3. greatgran

    greatgran Member

    Yes it is what it is... The lyme has caused me to have many MS symptoms , if fact that is what they were testing for when I got the lyme dx..

    At my age I am trying to learn to live with it the best I can but it sure gets discouraging and doctors are clueless.. Where I live we do not have an acupuncturest or I sure would give it a try.. Thinking of reiki but of couse no one near if fact I don't even have a GP our doctors are not good and very few and I am not able to drive out of town.. Oh, well

    Are you feeling better? The last time we talked you were sorta down and out.. Hope that has improved.. Glad for the supplements... expensive but keep us going , well I go sometimes ,sometimes not able..lol hugs
  4. neoplus1

    neoplus1 Member

    Please don't give up. I think working on your mind is a good idea, but not to accept that you will never get any better. The hope is there. I am sure there are many who were in the state your in right now, but they managed to improve. There could be so many things you haven't done yet and one could be the key, or many of them could be.

    The only way there is no hope of getting better is if you give up. If you still feel there is no hope, than I will just have to hope for the both of us.

    Steve
  5. Nanie46

    Nanie46 Moderator

    Sorry you are feeling so discouraged.

    Have you considered trying an herbal protocol for Lyme such as Cowden or Buhner?

    Hugs!!
  6. greatgran

    greatgran Member

    Yes, have tried Buhner , seems I will see some slight improvement , very little but they never last.. Do you have Lyme if so what has worked for you??
  7. greatgran

    greatgran Member

    After so many years it is hard not to give up but know I can't.. I do know at my age I will never feel anything like I once did.. Thank goodness every now and then I may have a 2 day break.. Have never had a full good week.. tks.. would love to here your story...
  8. gb66

    gb66 Active Member

    I've had CFS/FM for over 30 years. I have had to learn to accept that I may never be completely well again, but I don't consider this giving up. I have to live with today's reality.

    I do get down and discouraged at times, especially when I feel extra pain or extreme fatigue. Also when I have other stressors in my life, such as new illnesses that develop or family problems.

    The underlying illnesses are always there though, and I've not found much in the way of relief through the years. I just treat the symptoms as best I can on a day to day basis. I pray and try to keep my hopes up for better days.

    It is not one day at a time but rather one hour at a time most days. I do have some fairly good days especially in warmer weather. Right now I am having lots of painful days.

    I'm homebound except for medical appointments and use a wheelchair for them now, for the last couple of years. I'm 72 and have had this since the age of 38. Remember, accepting your situation and doing the best you can is not giving up, it's just dealing with your circumstances.

    Attitude is very important too but it's okay to let yourself feel what you feel sometimes. Just don't stay there too long. Hugs, GB66
  9. Nanie46

    Nanie46 Moderator

    Yes, I have Lyme. I treated with antibiotics for 3 years with a LLMD.

    The things that helped me the most were alot of doxycycline, bioidentical hormones, diet changes and exercise.

    How long did you try Buhner? I have tried some herbals like Teasel tincture. I have some cryptolepis tincture but haven't tried it yet.

    How long did you treat with a LLMD?
  10. Mikie

    Mikie Moderator

    I think that most of us have multiple conditions and/or complications with our main illness(es). This makes it very difficult to really get well and feel well too. We have to address all these conditions or we can't recover. I believe it is essential that we get rid of chronic infections or, at least, drive them into a latent state. The problem seems that just as we get one thing under control, something else pops up. It's like Whack A Mole.

    As many of y'all know, I've tried many treatments which have really helped me to go from being bedridden most of the time to being able to work part time. That is, until Sjogren's knocked the wind out of my sails. The old bone-crushing fatigue returned and I had to stop working.

    Then, came my peptide injections. After a year, my symptoms, except fatigue, disappeared. I haven't had a chance to see just how much the injections have helped because, first, I fell and had a bad head injury which interfered with my sleep. Then, at Thanksgiving, I got sick with a stomach bug which my family and I had a hard time getting rid of; it took a month. After that, I caught a cold which went into a sinus infection. Finally, I got a fungal rash on my face which is taking forever to clear up. No wonder I'm still fatigued.

    I'm resting and should know how well the shots worked, that is, if I stop catching everything which comes along. I never used to catch viruses, like colds, because of my unbalanced immune system. Now that my system is supposedly back to "normal," I fear I will be vulnerable to everything.

    I can only tell y'all my own long struggle to feel well. I'm not there yet but I do feel I've made huge strides. I think each of us has to find what works individually, depending on our main illnesses, complications and other conditions.

    My advice is to never, ever give up and to keep trying things. Almost everything which helped me is something I first learned of here. I have kept my expectations realistic and not think I will ever feel like I did before I got sick. I just hope to be able to feel the best possible under the circumstances.

    Good luck to everyone.

    Love, Mikie
  11. greatgran

    greatgran Member

    Nanie, I was with a LLMD for a year or more.. I just wasn't seeing any real improvement, cost abd the travel was to much, only treated with orals my Gp at the time told me he would give me the abx. He too suggested the herbal treatments.. I wasn't on buhner long enough, just too sick.. Now I wish I had have toughed everything out longer.. If I don't start seeing some improvement soon I am hoping this spring I will try another LLMD.. I will admit with diet, and supplements I did began to feel better, well from bed to being up..but Thanksgiving and the holidays took a toll on me and I can't seem to snap out of it.. I was never well enough to plan anything just able to be out and about some..'Could all be my fault as if I don't see improvement in a few months I back off and if I do seem to feel better I forget to stick with it.. I am a basket case no matter how I look at it..


    Mikie, well said.. I so agree.. even though I have chronic lyme along with cfs/fm or maybe its all lyme seems there is always something to knock is back when we get up.. At my age I don't expect to ever be like I once was, oh how I wish... But just able to get out and do some "normal " things is heaven..

  12. jaminhealth

    jaminhealth Well-Known Member

    NOTHING like even 6 yrs ago...my body is wrackeed with more pain, and I KNOW the hip surgery was a big downfall for me...

    We're so all different with what we are dealing with....and aging with. Everyone has some pain to one degree or another....

    You asked how I'm doing now, well, I'm a bit better and I've been taking this new anti inflammation supp, Antabloc and it's doing "something"....subtly but it's helping.

    I sleep longer and better and finding I take my advil closer to 8AM and not waking with pain at 4-5-6AM....

    Only WISH this supplement were more affordable, it's not fast acting but it's acting on my body.

    The issues have NOT gove away, my grandkids dad will start chemo and radiation tomorrow, he has stage 3 lung cancer....very very scared are we all.

    My daughter ended up with a ruptured tendon in her right arch of the foot, and surgeon says if surgery is done, 2 months in cast and a good year recovery....major foot surgery...

    So I know more now with both these people in my life, but I seem to be handling it a bit better....what can I do.

    And then the acupuncture continues to help.

    I do live in an area with a LOT of healers close by....

    Anxious for this cold weather to be gone, I feel better when it's not cold....take care. jam
  13. mbofov

    mbofov Active Member

    I know how you feel. I went for a very long time with hardly any improvement -at one time I was averaging one "good" day a month, where I didn't feel sick or crashed or detoxing or exhausted (though even on my good day, I could only do a few hours of light activity - otherwise would crash the next day and start the whole awful cycle all over again)

    I've made some progress finally in the last couple of years, things doctors could have helped me with if they had bothered to read my blood work - low folate indicated by high MCV on blood work, low potassium indicated by low potassium numbers, though in "normal" range.

    Anyways, dealing wtih these 2 things has made a big difference for me. But I still crash grrr!!!!, still am very limited in what I can do.

    But recently somehow I've gotten over my extreme sensitivity to detoxing. I don't know what caused this but figure it may be a combination of Spring Forest qigong and acetyl-glutathione. I don't know how, but after many years another part of my body is working better.

    So there was a very long time with no results, but after trying eveything in the book, and then some, I think I'm making a little progress.

    But it can get very depressing. It is hard, and it's okay to feel that way for awhile, but then you need to pick yourself up and get back to it. There is no magic bullet or even magic doctor who will help - it's mainly up to you.

    You might look into qigong - seriously - it can be adapted for anyone's health. Spring Forest seems to be a very good protocol, I got it on-line.

    Also, I was reading that colloidal silver has helped some people with lyme. I've taken it before for strep, and it was very effective. Unfortunatley, it's rather expensive to take long-term. I know some people make their own, but you have to do your homework to find a safe good machine. It can be taken safely though. Dr. Mercola has a lot of info about this, you can check it out.

    Anyways, hang in there. I wish it was not so hard. It's not fair, but life is not fair either.

    Take care -

    Mary
  14. ljimbo42

    ljimbo42 Member

    I understand how complicated and confusing trying to treat these illnesses is. I have been disabled since 1989 and spent several years in bed 80-90% of the time feeling miserably sick, exhausted and in pain.

    In the last year I have improved some, but in the last three weeks my energy has come up dramatically. I use to sleep 12 hours a day or more and still be exhausted,and need to naps throughout the day. Now I rarely take naps sleep 9 to 9 and a half hours a night and my quality of life has increased a great deal.

    What made the biggest change was taking methylfolate and methylcobalamin about 3 weeks ago. I tried to take methylfolate before that several times but even small amounts of 50mcgs would make me sick. I now take 200mcg methylfolate a day and 400mcg folinic acid a day.

    I believe the reason I was able to tolerate the methylfolate this time was because I went on the "FODMAP" diet for small intestine bacterial overgrowth (SIBO). That and supplements to heal my gut and kill off the bacterial overgrowth, slowed down the amount of toxins leaking into my system enough for me to tolerate bringing my methylation cycle back up a little.

    So this is what I have done, and am doing and its working very well. I am convinced that leaky gut, intestinal dysbiosis and a partial methylation block are my problem and treating them is the solution. I also believe that these conditions are very common in most people with fm/cfs. A lot of the most successful doctors in the field of fm/cfs treat these condition first and foremost, dr.myhill,dr.De Meirleir and many others.

    I found out after 8 or 9 months of aggressive treatment with supplements that I could not make progress without the fodmap diet. After being on the diet for only about 2 weeks I started to feel noticeably better. After about 4 weeks I was able to tolerate the methylfolate. So after 23 years I am finally getting some noticeable and sustained relief, so its never to late. Good luck to all!


    [This Message was Edited on 01/14/2013]
    [This Message was Edited on 01/14/2013]

  15. Mikie

    Mikie Moderator

    I took the liberty of putting spaces between your paragraphs to make your post easier to read. Many of us cannot read without the spaces in between. If you'll just hit the Enter button twice, instead of once, it will put the spaces in for you. I would hate to have someone miss your post because it's difficult to read.

    Love, Mikie
  16. ljimbo42

    ljimbo42 Member

    Thank you Mikie!
  17. neoplus1

    neoplus1 Member

    My story is not too bad compared to the stories I have heard on here.

    I was diagnosed with a temporary neurological disorder back in 2005 called Guillain Barre Syndrome and I suffered partial paralysis and loss of physical function. This was triggered by a flu like infection I had a month prior.

    My recovery took about 6 months. During that time I started to notice feeling tired a lot and needing more sleep than usual. I also had a slight head pain and dizziness that came and went, and the lymph nodes under my jaw swelled. I seem to also have developed a slightly swollen lymph node on the back of my neck. I fully recovered from the GBS around December 2005/January 2006.

    As the years went by, the symptoms slowly became worse and new symptoms starting arising. I began experiencing more pain and fatigue. I was getting dizzy more frequently, more muscle tension, aches and pains, feeling more and more flu-ish, pain around the lymph nodes, and just crashing. The health services at my college kept saying I had "viral syndrome."

    In 2009 I was struck with sudden chest tightness(not pain, more of like a numb heaviness and like my chest wouldn't expand). I felt short of breath like I couldn't get a full relaxed breath. As usual the doctors found nothing and basically it is just assumed it is related to the FM/CFS.

    All of these things basically have progressively become worse up until about the last year or so and then stabilized. Recently within the past few months I have actually seen little improvement here and there. There are some things I have been doing over the past few months that could account for that, but it could also be that I am on the other side of the disease and will slowly get better over time much like how the onset was slow and progressive.

    So that is my story more or less. I have lost a lot of my friends, I couldn't finish college, can't work, lost my significant other, and people don't seem to understand. But I am hopeful and optimistic. Take care.

    -Steve
  18. Nanie46

    Nanie46 Moderator

    I know it can all be so discouraging sometimes....but please never give up hope.

    You say that with diet and supplements you did begin to feel better....so that's good! It is a great step going from being in bed to being up!

    I think diet is probably even more important than we think. Remember how Dr Terry Wahls reversed her progressive MS through diet changes? There lots of info online about her.

    Maybe you can try to go back to what you were doing when you began to feel better.

    Do you mind sharing what you are taking at this time?

    If you changed your eating habits during the holidays, it is never too late to go back to what you were doing before. Everyday is a new day.

  19. MicheleK

    MicheleK Member

    GB66 I too have contemplated if I will ever be well again.

    I have had ME/CFS/FM/POTS for 20 years now. I have had times of relative gains in activity that have come out of seemingly nowhere and ended much the same way.

    Because of those times, I do know that it is possible that at any moment I could be feeling better and find myself out and about again. Certainly I am not truly well during those times or I would not relapse again.

    I am 56 years old. I think the hope of overcoming these physical diseases is more probable the younger one is. For the young, there is more time for medical breakthroughs.

    I do not know if I will ever be well again, but I do wholeheartedly beleive that I will get a better quality of life with new medical discoveries into the illnesses I battle daily.

    With all my heart I understand what and why you ponder the question of us ever getting truly well again. I think I could do wonderous things if I only got a 25% increase in health. 25% after this long would probably feel like I could do normal daily life again. So I look to the time I will be given that 25% and I try to push the thought of full recovery to the back of my thought list. Once I get the 25% back, I will increase my dreams of improved health higher.

    Hugs, MicheleK

  20. mbofov

    mbofov Active Member

    That's an amazing story - you've gone from bedridden most of the time to feeling so much better. I think it would be a really good idea for you to do a separate post about this - I think your information could help a lot of people on this board.

    My energy picked up markedly when I started taking methylfolate 2-1/2 years ago (I had already been taking B12 without noticeable results), and I also had to start taking potassium shortly thereafter. The methylfolate cause an increased need for potassium as cells started healing. So initially my potassium levels dropped when I started the methylfolate because of the increased need for potassium, causing horrible fatigue, until I figured out what was going on, thanks to Freddd's detailed instructions on Phoenix Rising board. I would have been sunk without learning about the increased need for potassium.

    Anyways, your story really is amazing. I don't know how many people I've read about on this board who have been bedridden at various times. I hope you do a separate post -

    Mary