Help with ME

Discussion in 'Chronic Fatigue Syndrome Main Forum' started by Mandyspike, Apr 30, 2015.

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  1. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- I just went up from 2 to 3 capsules a day of charcoal. It seems like the longer I take them the more they help. Let me know if it helps you. The prebiotic I'm using is called acacia fiber or acacia gum. I heard it is a very good prebiotic from Dr. David Perlmutter.

    He is a neurologist but has researched the gut extensively because he discovered that gut problems often cause significant problems in the brain. I continue to improve and feel better and better!:) That's fantastic that your hot flashes stopped! Are they still under control with the meds?

    The prebiotics should feed the good bacteria in your gut, so they multiply and push out the bad. With a little good luck you might be able to get rid of the minor CFS symptoms you have with the prebiotics. Wow, 2.5 hours of dancing!! That's like running a small marathon!!:D Sounds like soooo much fun!!

    I will talk to you again soon. Take good care Mandy! ...... Jim
  2. Mandyspike

    Mandyspike Active Member

    Hello Jim, it is really nice to know that you are feeling better. I haven’t tried the Charcoal yet but have been having prebiotics. My symptoms seem to have subsided a little these last few days which is a relief!
    Yes hot flashes under control thank heavens! It’s a great feeling not to be burdened with them. My sleep is a little better too so things are looking up for me.
    I’m still doing my dancing. I really can’t get enough. This sounds disgusting I know but by the end of the night last Thursday I was saturated!! I danced that much. This week I am going Wednesday and Thursday. I am a glutton for punishment lol
    What is happening with you this Christmas? Are you doing anything with your Son? How is he by the way? Is he still with the girlfriend?
    I have made a start regarding Xmas, I have bought one or two presents but quite a few to go. You will never guess what we are doing Christmas Day? We are going to visit family in the morning then my Husband and I are going to go to our favourite Indian restaurant and have a meal there. Just the two of us.
    I have a lovely piece of beef cooking slowly in the oven so I am off now to prepare some veg to go with it. It smells delicious!!
    Have a good evening Jim
    Keep well
  3. ljimbo42

    ljimbo42 Active Member

    Hello Mandy- Did your symptoms improve from the prebiotics or was it something else. I have been feeling really good the last several days as I continue to go up on the dose of prebiotics. I dug up some computer parts I had in storage and put together a second computer, just in case something happens to my new one.

    The problems you have been having with sleep could be either from CFS, which is extremely common or from menopause or both. Glad to hear they are improving! I use to dance a lot before I got sick. I too would dance until I was drenched in sweat!:D I loved it!

    My son should be coming by on xmas and spending some time together. He is doing well and still with his girlfriend and her daughter, I think she's 7 years old.

    Xmas morning with your family and a peaceful dinner with your husband, at your favorite Indian restaurant sounds like a really good xmas.:) I need to ask my son if he wants a blu-ray dvd movie for xmas. He has a big collection and loves watching movies.

    Take good care Mandy and enjoy the dancing!!:) ........... Jim
  4. Mandyspike

    Mandyspike Active Member

    Hello Jim, how are you today?
    I am just the same as usual. I continue to have mild cfs symptoms most days lately but I am coping with them and not letting the problem get to me too much. I am still not sleeping very well. I’m averaging around 4.5 hours a night so not good. I do think the HRT is helping me. If I wasn’t taking it and still having hot flashes I would perhaps only get around two hours so it definitely helps there.
    Change of plan this Christmas. My brother says he will be on his own so asked my Hubby and I would we like to go celebrate with him. A couple of friends have also invited us. Anyway we have decided to go to my brothers house, he is great company and a fantastic cook. We will have an Indian meal some other time. Best laid plans and all that!
    Have you met your Son’s girlfriends little boy or hasn’t it come to that yet?
    That’s a good idea creating a second computer. It’s wise to have a back up plan, it also keeps you occupied too. I bet you get great satisfaction by putting it altogether yourself.
    Are you getting any exercise lately? I know how you enjoyed your walks.
    The temperature over here is around 8c at the moment. I can hear that it has started to rain now. What’s it like in your neck of the woods?
    I shall go and prepare our dinner now. Spaghetti Bolonese tonight. Yummy!
    Have a great afternoon and evening Jim
    Bye for now
  5. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- I am doing well I'm happy to say! There are some very safe herbs you can take if you want to, that will help kill off some of the bacterial overgrowth that I believe are causing your cfs symptoms. The herbs thyme and ceylon cinnamon are both very good for gut health.

    I just remembered this. I started taking holy basil for it's effects on the gut and found it makes me very relaxed and sleepy. I started taking it in the afternoon, then switched to taking it a night because it makes me so sleepy. It really helps me drift off to sleep. So maybe thats something you might want to try to help you sleep?

    I just started taking some psyllium fiber to help my gut out too. Psyllium is Metamucil without any added ingredients. It seems to be helping. I am becoming more and more active in the last few weeks. I find myself looking around my apartment for things to do almost every day now to keep myself busy!

    So it's xmas at your son's place now instead of Indian food. Sounds like a good time either way.:) I have met my son's girlfriends little girl.;) She seems like an average 8 year old, into toys and computer games. I haven't been doing very much walking lately, instead I am doing more around my apartment. It's really amazing how much I can find to do, when I have the energy!

    I guess you don't need to any walking now that you are doing all that dancing??:cool::) How's the dancing going? You still crushing grapes?:D

    It's getting really cold here, it's -4c rate now and going down to -10c tonight. Tomorrow night it's suppose get down too -13 already!! Brrrrrrrrrrrr! The thought of winter makes my teeth chatter.;) We just got our first snowfall of about 8cm a few days ago and another 3-4cm yesterday. Hope you are doing well....

    Take care Mandy!................ Jim
  6. Mandyspike

    Mandyspike Active Member

    Hi Jim, I would just like to wish you a very merry Christmas. I hope you will feel well during the festivities.
    I will message you again in The New Year.
    All the very best
  7. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- Thank you!:) My best wishes to you also. I hope you have really enjoyable and healthy, Christmas.
    I will talk to you again next year.:D

  8. Mandyspike

    Mandyspike Active Member

    Happy New Year Jim.
    I hope you have had a nice Christmas. Ours has been very nice but I am glad it’s all over. We have already taken down the Xmas decorations in the house.
    I have just been chilling out today. I have had a couple of cookery books bought me which have kept me entertained for the day. Lots of delicious recipes that I will look forward to trying.
    How have you been during the festive period. Did you get to see any family.
    My sleeping seems to have improved recently which I am glad about.
    Well all the very best to you my friend.
    Take care of yourself
  9. ljimbo42

    ljimbo42 Active Member

    Happy New Year to you too Mandy!:) I did have a good xmas. My son and his now fiance, came over and we did some catching up. I think we all had a good time. It's been absolutely FREEZING here. The last couple of weeks it's often been -23 to -26c with the wind chill!! :eek::eek:o_O

    That's during the day, of course at night it has been even colder. I'm doing really good. My health continues to improve but I still have to watch out for PEM creeping in when I do more than 4-6 hours of physical activity a day.

    Those cook books should keep you busy in the kitchen for a while.;) I know that's something you enjoy.

    Haha, your sleeping has improved and mine is a little worse.:D Not bad though. I usually get at least 6.5-7 hours and just go to bed early that night if I need to.

    How's the dancing going? You learning any new types of dances?

    Hope you have a wonderful, peaceful 2018!

  10. Mandyspike

    Mandyspike Active Member

    Hi Jim, yes we have been listening to the weather reports for over where you are. I feel the cold terribley and I’m afraid that that temperature would see me off lol.
    It’s good that you were with your Son and girlfriend at Christmas
    It’s great to know your health is improving. Let’s hope you carry on that way.
    I am doing good. Actually I am so healthy at the moment which is great but having said that I many a time experience PEM come the evening. I just put up with it to be honest.
    My sleep has really improved, but sadly yours has worsened I have been getting on average around 6 hours a night ( a bit like yourself) which for me is amazing!
    I have bought myself a fitness tracker which I wear on my wrist. It calculates all the steps I make and is able to inform me of how many hours Sleep I get along with other fitness capabilities. It is unbelievably accurate. It truly is a great little gadget. It’s called a Fitbit.
    A couple of weeks ago I went walking out during the day then went dancing in the evening and with those two activities I clocked up 22,ooo steps.
    The dancing is great Jim, I am loving bing it! It’s the same dance I am doing but I am learning different moves every week.
    Do you remember during 2016 I attended a fitness club whereby I used to go swimming? Well I have started a new membership and now i am not only doing swimming I have incorporated the gym and a yoga class. I have to be careful with the yoga because a while ago I went to a certain class and I couldn’t move for ages after doing a certain move. Do you remember me telling you that story?
    So as you can see, I am one busy lady at the moment.
    Going to put a Lasagne in the oven now. Not home made I shamelessly admitt. Looking forward to it anyway.
    All the best Jim
  11. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- I had to go shopping in that freezing weather we had a couple of weeks ago. It was -29c with the wind chill when I went!! It was so cold it actually felt like it was burning my face. I'm glad your sleep is improving, it can be a real game changer! My sleep is kind of erratic lately, not that it's every been very consistent.:)

    I just had a couple of restless nights and didn't much sleep, then last night I got a good 8 hours. A lot of people with ME/CFS have Fitbits or trackers, to keep track of the steps they take in a day. I googled 22,000 steps and google says that's about 10 miles- WOW!!

    I do remember you telling me that story. It's sounds to me like the PEM isn't holding you back very much.:D So good to hear that you are doing so well Mandy! 58 days left to the first day of spring:D:cool::)

    Take good care Mandy-......... Jim
  12. Mandyspike

    Mandyspike Active Member

    Hi Jim, Have you thawed out from your shopping trip?? -29c??? Now that’s what you call cold? I can’t say I have ever experienced a temperature so low!! What’s it like at the moment? It’s around 4c here at the so not too bad at all.
    Hey Jim I have been a fool yet again! I have terrible PEM. I don’t feel well at all. Couldn’t make the club today I feel that bad. It’s 19.00 right now and I really can’t wait for bedtime. I hope I feel better in the morning.
    Yes not long until Springtime now. I am so looking forward to it as you will be.
    I am looking forward to May especially as it will be my Daughters wedding in Cyprus. We used to go on vacation every year my husband and I but we haven’t been away for six years. It will be nice to get away although I have to admit that I hate flying big time.
    Do you still get out for a stroll? Weather permitting that is.
    Hope you sleep well tonight.
  13. Queenofsleep

    Queenofsleep Member

    I have had fibromyalgia since 2004. I am on disability retirement and social security since 2007. I lived in Pa until my husband of 28 years died. In the following year, my mother and step father died. I moved to Florida in 2015. I don't know how I got the energy to move- but I did. My doctor just diagnosed me with bipolar and she said that I probably was having a manic episode- hence the energy.

    I have been basically in the house for the last 3 years. I move from the bed to the sofa. I only go out to the store when necessary. I live alone and have no family here, but my biggest problem is that I have become lazy and unmotivated! I am constantly exhausted! My life is passing me by.

    I guess I just want to connect with others. I bought a townhouse and now realize that between the HOA fees and the property taxes, I cannot stay here. I want to sell the house and move, but honestly, I am SO tired.

    I'm reaching out for encouragement.
    ljimbo42 likes this.
  14. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- Yes, I am just starting to thaw out from my shopping trip!:D It's not bad here now, it's -1c and the sun is shining, which almost feels like spring compared to a couple weeks ago. We've had some warm days in the last week or so, up around 6-8c.
    I'm sorry to here about your PEM, PEM stinks!!

    Hope you are feeling better now. I googled Cyprus, it looks like a beautiful place for a wedding or almost anything!! I have never flown but I think I would feel a little unsettled, until I got use to it. I haven't been out for a walk for a while now. Instead I am doing more odds and ends here at home, it's much warmer.:)

    Have you thought about lowering your carb intake, just a little and maybe taking 1-2 herbs to help kill off the bad bacteria in your gut again? I was talking to someone a few weeks ago. That's what he did and in a few months he was completely cfs free-100%!!

    48 days left to spring! Hope you sleep well tonight and keep the PEM at arms length.:)

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  16. Mandyspike

    Mandyspike Active Member

    Hello Jim, sorry for the delay in replying to you. I overlooked your last post and only just realised you had answered mine lol.
    Yes I am pleased to say that I am feeling a lot better now. This last few days I have slept really well. It looks like I am back on the straight and narrow. I am so relieved I can’t tell you how much, I really had it bad.
    My fatigue seems to have subsided which is another relief.
    I don’t have many carbs these days Jim, since I have been back at the spa I have been watching what I eat. The only problem is I have lost some weight which isn’t good. I need to up my calories. Which herbs do you suggest I take?
    I am enjoying myself at the club. I have been to what’s called FitSteps today. It’s a mixture of all different kinds of dancing i.e Zumba, Tango, Cha Cha Cha, Waltz and several others. It great fun. Yoga tomorrow and perhaps a swim.
    It has been a glorious day here today. The sun has been shining most of the time which is brill!!
    Hope the weather where you are has continued to be nice for you.
    Cyprus is beautiful but like I say I am dreading the flight. I would have preferred my daughter to have got married a little closer to home to be truthful, but it’s something I have to do. I am looking forward to seeing my beautiful daughter all dressed up in her wedding dress, that makes everything worth while.
    How is your Son? Does he still take you for your monthly shop?
    Unfortunately I won’t be able to have a soak in the Epsom salts because unfortunately I have no bath tub. I only have a shower. However, I will try the ginger tea. Thank you for that.
    That’s all for now
    Take lots of care
  17. ljimbo42

    ljimbo42 Active Member

    Hi Mandy! Sorry for my late reply as well. I'm suppose to get an automatic email when someone posts to this thread but I never got one for your last post.:confused: It's really good to hear that you are feeling better.

    There are so many that help to get rid of bad bacteria but don't hurt the good ones. Many spices are very good like holy basil, oregano, and thyme. I buy the capsules but some people make a tea.

    The Fitsteps sounds like a really good time!:) You sound like you are doing very well, which is great. Yoga swimming, dancing-wow!

    You probably have already braved the flight to Cyprus and had your daughters wedding by the time you get this. lol

    My son is still engaged and just started a second job. Now he works as an electrician and at an auto parts store. He is very very busy! He does still take me shopping though.

    You are doing so well, I'm really happy for you.:)

    all the best, Jim
  18. Mandyspike

    Mandyspike Active Member

    Hi Jim, how is your health at the moment? Are you feeling ok? Have you been able to do any exercise?
    My Son and his family are away for a few days so I am taking care of their two dogs while they are gone. Along with mine I have three here at the moment. They have been no trouble and I have enjoyed taking them for long walks .
    I am feeling incredible at the moment. It’s the best I have felt for years! I can’t stop telling my Husband how well I am feeling. Being able to get my sleep pattern back on track helps considerably.
    I have planned to attend a different class everyday at the club next week. I am really enjoying all the activities.
    What’s the weather like for you over in New Hampshire? We got up to snow this morning but as the day has progressed it has diminished quite a lot I am pleased to say.
    My Daughters wedding is at the end of May Jim. Not long now.
    Has your Son and his girlfriend decided on a wedding date yet? Weddings can be expensive so perhaps he needs to do a second job to accumulate some extra cash to help pay for it.
    Well it’s walkies time again so I will say goodbye.
    Look after yourself
  19. ljimbo42

    ljimbo42 Active Member

    Hello Mandy- I am feeling really good! I walked to the store a few days a go. That was the first walk I've done in a few weeks. I've been so busy here at home, cooking, cleaning, organizing and fixing things, that I haven't had the energy to exercise.

    My energy is really good though and slowly keeps creeping up! That's fantastic that you feel so well. I also feel almost completely free of CFS at times. My energy is REALLY good but I have to make sure I don't over do it and get PEM.

    It's amazing how a lack of sleep can turn our lives upside down isn't it? On the other side, getting enough sleep can be incredibly rejuvenating!

    The weather here is a little below average but not bad at all, given the brutally cold winter we had. Just a couple of weeks ago we got about 61cm of snow in about a week.:eek:o_O

    Do the people in your town freak out a little when they have to drive in the snow? Your daughters wedding, at the end of April, should be a beautiful one, especially in Cyprus.:) My son and his fiance haven't set a date yet, that I know of.;) I hope your health continues to improve. It certainly seems like your not letting that good health go to waste!!:D

    Take care Mandy, Jim
  20. Colorado_Girl

    Colorado_Girl Member

    Hi Mandy and Jim, Do you mind if I join the conversation? I'm in need of some support right now. I recently added some new supplements (Methylfolate being one of them) and I have gotten worse. Severe depression and my energy has completely tanked. Jim, I read another post and you seem to be very knowledgeable about Methylfolate, mind if I pick your brain?

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