Help with ME

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

  1. Mandyspike

    Mandyspike Active Member

    Hello Jim are you still feeling good? I am not too bad although I have had to resort to sleeping aids again. It's horrible isn't it when you are not able to sleep? Wow you get 7 to 8hrs. I haven't had a full 8 hours for about 20 years!
    My back is bad at the moment so I am a little restricted in what I do. It happened while I was at a yoga class on Monday. I was in the middle of a pose and I just felt my back go. I couldn't stand up for an hour it was that bad. It's a lot easier today but I still can't bend down. Anyway I have decided not to go to Yoga again. I can't go through this again, I have enough to contend with.
    We had a lovely sunny day here yesterday so I spent most of my day sunning myself in the garden which was really relaxing. It isn't as nice today but it could warm up later. I have just put my washing outside to dry so fingers crossed.
    Well that's all the news I have Jim. I hope you have a great day ahead.
    All the best
  2. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- Yes I am still feeling good-better even.:D I'm not improving as fast as I would like, but I am definitely improving! That really stinks that you're having a hard time sleeping again! I feel very lucky that I haven't had much of a problem sleeping in the last few years.

    I have back problems fairly often. Usually they are fairly minor, but once in a while, I'll get a disk that's slips out of place and causes excruciating pain-what a nightmare! Back pain is one the worst pains I've ever experienced.

    I got whiplash from being hit in the back of my car by a pick-up truck once. I woke up a few days later and was in so much pain, I couldn't get out of bed!! That was really scary! I eventually did get out of bed, obviously, because here I am. :D

    I've been doing a little stretching lately. It makes me feel more energetic and of course, a lot less stiff. You might want to try some gentle stretching exercises when your back is better?

    It's raining here rate now, but the last few days had been really nice, not too hot and not too cold.:) Hopefully mother nature will be kind to you and bring a more sunshine and warmer weather. Hope your back feels better soon, if it doesn't already.:) Take good care Mandy.................. Jim
  3. Mandyspike

    Mandyspike Active Member

    Hello Jim, I am just trying to catch up with my emails and you are first on my list.
    The weather here is great at the moment. I have been sat out for a short while in the sun this afternoon. I can't seem to tolerate the heat like I used to so I headed back indoors and groomed Oscar my dog instead.
    My back seems to be a lot better thank you Jim and I've been able to get a stroll in here and there.
    My Sister had a slipped disc one time and like yourself when it happened to you she was in agony, so I sympathise.
    My sleeping pattern is right out the window, I only had about 2 hours again last night and that isn't a one off, its most nights I'm very upset about it. I look and feel a complete wreck!!
    What have you been up to? Are you feeling any better? How is your Son? I forget what his name is. You did tell me. That's another thing, my memory is really bad, it's becoming really embarrassing lol. I suppose it's what you call brain fog.
    Ok I had better crack on and email the next person on my list. It will soon be time for me to make dinner.
    Look after yourself.
    Bye for now
  4. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- The weather here has been really nice, not too cold not too hot-"goldilocks" weather!:) I just got back from a walk around the block and feel really good, relaxed, yet good energy. Is Oscar still making you carry him on your walks?;)

    Sleep is soooo important, I'm really sorry to hear you are still having problems. I still don't have a car, so that limits how much I can do. I do walk to a couple of stores that are fairly close to me once in a while. I still do a lot of reading about ME, to get a better understanding of how to treat it. I also still go out waking just for exercise 2-3 times a week. Once I'm able to get a car, I'll never be home, except maybe to sleep!

    I feel so much better than I did a few months ago and I am still getting better!:D:cool: My son is doing good, he just got his 1 year raise from the electrical company he works for as an electrician. I call my son JJ but his name is James Justin, so JJ for short. How are your kids doing?

    Ahhh brain fog, my all too familiar friend! I too have a lot of trouble remembering things. Good to hear from you Mandy.:) Best of luck getting your sleeping pattern worked out! Take good care of yourself ............ Jim
  5. Mandyspike

    Mandyspike Active Member

    Hi Jim, hope you are still keeping as well as you can. It's been ages since I last got in touch with you hasn't it? I have been busy with my Nephew's wedding, my Daughters 40th birthday party and trying to plan my Daughters wedding next May in Cyprus its been very exciting!! I have managed to purchase my mother of the bride's dress already it was truly a stroke of luck that I came across it. I'm all sorted with the shoes, bag and hat to go with it.
    Everything must look rosy in my garden to you Jim but it isn't I can assure you.
    The insomnia that I am suffering from is truly ruining my life. It really is unbearable! I'm not getting anymore than 4 hrs a night and a lot of the time I am only getting two. And the worse thing is that's with taking medication, if I didn't take the medication I would not sleep at all I am exhausted all the time and I just don't know how I cope with everything that's going on.
    What's the weather like for you? I believe it's been 47c in some parts of Europe. Fortunately it hasn't been like that here in the U.K. We have had a lot of rain as usual. A little sun would be nice.
    I can't believe JJ has been with the electrical company a year already. I remember you telling me he had got the job. I'm pleased he is doing so well.
    Well that's all for now Jim. I will try not to leave it so long next time.
  6. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- I am doing quite well and am still slowly improving.:) Boy , you have been busy haven't you! That is horrible that your insomnia is still that bad WITH meds-wow! It really sounds like you have some deeper problem causing your insomnia. Have you talked to your doctor about possible hormone imbalances? I have heard many people say they can cause profound insomnia and they often happen around menopause. That might be something to look into if you haven't already.

    The weather here has been beautiful, not too hot, just very nice for the most part. I hadn't heard it had been 47c in parts of Europe, that is HOT! With your nephews wedding, your daughters birthday and your daughters wedding, it sounds like you have a full plate for a while.:) I hope you find some way of dealing with the insomnia so it's not so much of a burden. If I only get 6 hours of sleep, at some point in the day, I am struggling just to keep my eyes open.

    My son and his girlfriend are moving into an apartment together this coming weekend. They have only been dating for several months so I hope they are able to stay together a while. Like I'm sure you know though, once they leave the nest, all bets are off!:);)

    How is your son doing? Well I hope.

    Best of luck with the insomnia. It really does seem like there is something going on that the doctors might be missing. Until next time, take good care of your self Mandy........... Jim
  7. Mandyspike

    Mandyspike Active Member

    Hi Jim, glad to hear you are faring well. The insomnia for me isn't going away I'm afraid. It's making me quite miserable. I have an appointment with my Doctor next Tuesday morning so I will take your advice and mention the possibility regarding hormones. I have nothing to lose have I. I am just so glad that I don't seem to be suffering these days with the ME/CFS. If I had to endure that as well as the insomnia, my life wouldn't be worth living.
    I am sat listening to all the golden oldies on the radio and it's made me think about you and your karaoke. Are you still enjoying it? I love the old stuff.
    Have you been to see JJ's apartment yet? It is nice getting your first little place together.
    I hope he and his girlfriend will be very happy.
    My Son isn't so bad. He just has a lot on his plate at the moment. Our kids can be such a worry!
    I went along with my Daughter yesterday looking for wedding gowns, and guess what? The search is over!
    She came across the dress of her dreams. I know she is my daughter but she truly is a beautiful girl. I'm so proud of her. She is 40 and this will be her first marriage.
    Well I will go now as I have a few things to do.
    I will let you know what the Doctor says about my sleep problem and thank you for your input.
  8. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- Sorry you are still having problems with insomnia. I hope your doctor can help with some low dose hormones. I have heard that a lot of people get relief with them. I think I have heard of progesterone helping many women.

    Yes, I am still doing the karaoke thing, about an hour 2-3 times a week.:) I also listen to a lot of the oldies and music from the 70's- my high school years. I haven't seen JJ's apt. yet but he did email me a bunch of pictures, it's REALLY nice! Most of all, him and his girlfriend love it.

    It's always good to hear that you have put your cfs behind you.

    I think it's wonderful that your daughter is getting married for the fist time at 40. By the age of 40 people have much more of a good sense of who they are and who they really want to spend the rest of their life with. You sound like a very proud mama, as you should be. :) I'll bet your daughter was thrilled to have found the perfect dress! I continue to improve slowly but something that has changed profoundly, is my extreme anxiety, that I've had since I was a teenager, it has lessened to a point where it is often completely unnoticeable!!

    I have mentioned it to you a couple of times but I don't think I made it clear how strong my anxiety use to be. What a gift to have it much, much, much more normal! No doubt in my mind that my anxiety was caused by dysbiosis and leaky gut. As they have improved, so has my anxiety.:D

    I hope your daughter has a beautiful wedding, to remember for a lifetime!

    Take good care of yourself Mandy.:).................... Jim
  9. Mandyspike

    Mandyspike Active Member

    Hi Jim, I did go to the Doctors today and I mentioned to her about what you said about hormones and menopause and she admitted that it could be linked to my sleepless nights. I have to go see her again on the 11th September. I had to make a 20 min appointment so she could give me a thorough mot of my body. I will be given HRT. I really don't want to go down that road but I have to try it. I will give it a few weeks to see how I get on, if it doesn't work at least I can rule it out. Thanks for bringing it to my attention. My Doctor also recommends CBT. I can't see that helping but again I am willing to try anything. I will phone and make an appointment tomorrow.
    I am very pleased that your anxiety has lessened. I don't think I have ever suffered with it so I'm not sure what you were going through. Enlighten me.
    I'm sat looking through the window and it's pitch black outside. . It's just turned 8.30 and it's dark already. Autumn will be upon us very soon.
    August for us has been horrendous! Just the odd nice day here and there. A lot of rain as usual.
    I am like you, I love 70's music. I think I have mentioned to you before that I have come across a radio station that only plays the old stuff. I love it and listen to it all the time. The problem is I'm not keeping up to date with the latest releases and I like to be in the know.
    Have you watched any good shows on TV lately? I am not into anything in particular at present although coming soon is what you call Dancing with the Stars. I don't usually watch it but I know you like it. Well this time a celebrity who I love will be joining the new series and I can't wait to see her and she will have my full attention. Over here we call it strictly come dancing.
    I have no more news Jim,
    Enjoy the rest of your day
  10. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- I really hope the HRT helps you. As I understand it, dosage is very important, so you might need to go up or down on the dose to get it right. I have done a lot of CBT for anxiety and it helped boost my confidence but didn't lower my anxiety. I think that's because most of my anxiety is caused by a leaky gut, so changing how I think, didn't fix my gut.:D CBT might help keep your thinking in check, so you don't create more anxiety because you can't sleep. That can cause a snowball effect, where you can't sleep, then worry about not getting enough sleep and that worry keeps you awake.

    The anxiety I have is much milder than it use to be. It has lessened profoundly in the last few months or so, from treating my gut. It use to be extremely uncomfortable, with a pounding heartbeat, sweating, flushed face etc. I would most often get this anxiety in meeting new people or in stores, at the checkout counter. What really confused me was that I really enjoy talking with people and getting to know them, yet would get these anxiety attacks.

    I realized a few years ago they couldn't be psychological, because I didn't have a psychological trigger, it wasn't something I was thinking that was causing it. It felt like my mind was overacting to something, that I had no control over. I believe that was what is called neuro-inflammation or mild brain inflammation, from toxins in the gut, causing an exaggerated anxiety response in the brain. It's what makes most sense, given how my anxiety continues to lessen, the longer I treat my dysbiosis and leaky gut. There are many people with cfs that have high or very high levels of anxiety, so it is very common.

    I feel the same way about listening to the oldies. I feel like I'm not keeping up with the new music and I might be missing something!:) We have been very lucky here weather wise, so I can't complain. I hope you guys get some more good weather before Autumn sneaks up on us. I'm watching Americas got talent rate now, it's just about to finish in week or 2. Dancing with the stars will be on again here in a few weeks. It's on twice a year, spring and Autumn. I hope you enjoy watching your celebrity on strictly come dancing! Good luck with the HRT and CBT! It's like they say, "nothing ventured, nothing gained!":D

    All the best, Jim
  11. Mandyspike

    Mandyspike Active Member

    Hello Jim, hope you are doing good. I'm not too bad at the moment although I admitt that I have been experiencing mild symptoms of cfs, nothing alarming but they are lurking in the background.
    I am very pleased to inform you that I have noticed a vast improvement regarding my sleeping. I have been averaging around 5 hrs per night, it doesn't sound a lot to most people but believe me it's so much better than it has been. I will settle for that.
    Hence one of the reasons that I decided against going for HRT after all. A friend I know was somewhat concerned about me going down that route as HRT wasn't good for her. She suffered other ailments as a consequence which didn't sound very nice and that worried me.
    If I ever feel the need again I know I can always go visit the GP.
    The feelings of anxiousness that you mentioned sounds an awful thing to have to cope with. Life can be very difficult can't it Jim?
    I have my 13 year old Grandson staying over this week as his Mother has gone to Dubai. He is no trouble. He has been in school for the week and in his spare time hangs around with his mates. I asked him a short while ago if he fancied baking with me and he politely turned me down lol. I don't think he is into cake making with Grandma anymore.
    It's sunny today but not warm enough to sit out in. I sat in the garden awhile ago to try and top up my Vitamin D levels but as soon as the sun sneaked behind a cloud I soon ran back into the house.
    I have started a dance class with my best friend. I go on a Thursday evening. It's called Ceroc. It's a French Jive I think.
    It's exhausting let me say. Good fun though and I certainly need the exercise.
    That's all my news for now.
    I'll get in touch again soon.
    Keep well
  12. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- Sorry to hear about the mild return of symptoms. I think once we get cfs, we are so much more vulnerable for it to return. I'm still doing good but in attempts to speed things up, I often over do it with herbs and cause too much die off and a flare in symptoms.

    It seems like your sleeping has improved quite a bit, that has to be a real relief!
    HRT does seem like a big step to take and I don't think it's a decision to be taken lightly. I've heard some people say it's one of the best things they've ever done for themselves and others that have said it was a horror show for them.

    Life certainly can be very, very difficult sometimes. If suffering makes you stronger, as they say it does, I should come out of this Hercules!!:D

    I'm not surprised your 13 yo grandson turned down your invitation for baking.:) He's becoming a man and as you know, men don't bake.;)

    The weather here is just starting to cool off some and I am really enjoying the cooler weather. I love summer but it often gets very hot here and in addition to that, I live on the third floor, which makes it much hotter.

    That dancing class you are taking sounds like a lot of fun! I love to dance but dancing and my cfs don't get along very well.:) Under the right circumstances though, I would go dancing this weekend and suffer a little PEM!

    Good to hear from you Mandy, stay in good health! ...... Jim
  13. Mandyspike

    Mandyspike Active Member

    Hi Jimbo, I thought it was about time I contacted you and I am hoping that you are ok. I continue to suffer cfs symptoms, I have felt dreadful these last couple of weeks and today I have suffered a lot of discomfort. I am riding through it the best I can. I am keeping up with my dancing no matter how I feel. It won’t beat me.
    My sleep is disturbed once more and I am sick of it. I have to take sleeping tablets which isn’t good as you know. I really have no choice. Anyway I have decided because of the circumstance to go for HRT after all. I have spoken to an acquaintance earlier who tells me she has been on the replacement for the last 15 years and she feels great. I have to give it a go because I am feeling quite miserable.
    It’s getting quite chilly here now although we have had a little sunshine this afternoon which has been nice.
    We have been doing a bit of decorating here at home so the house is upside down. I hate being in a mess! Well, when I say we I mean my husband lol. I do detest DIY
    What have you been watching on TV. I am still watching Strictly. Aren’t the dancers amazing? I wish I could dance like some of those people. I am enjoying my time dancing but I am finding it rather difficult to be honest. I can’t seem to get the footwork right. It’s fun though and it’s good to have time with my friend.
    How is your Son and girlfriend? Are they both well?
    Hope to hear from you soon
  14. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- I'm still doing well and continuing to slowly get better. Sometimes I feel like I'm a snail, in a snail race AND I'm not winning!:D:rolleyes: However, I am moving forward, however slowly, so that's something to hold onto. :)It's a very slow process because of the adverse effects I get from the supplements I'm taking, I can only go up on the dose, very slowly. So sorry to hear that your cfs has reared it's ugly head again!:eek::eek: I hope you can turn it around again quickly. I wish you the best of luck with the HRT.

    I have heard that for some it's truly miraculous. It's been very warm here for the last couple of weeks, to the point that I have often needed fans all day and night. Frankly, I'm really sick of the heat and am looking forward to cooler weather and luckily it's just started getting cooler today.

    That's funny!!:D So you are the supervisor and just tell him what to do?:D;)

    I'm watching dancing with the stars again that just started a couple of weeks ago. Some of the dancers really are incredible, given they don't have any formal dance background! I love dancing and hopefully I will be dancing again in the not too distant future.

    My son and his girlfriend are doing quite well, although they are still getting their finances in order, from the cost of the move into their apartment. My son's girlfriend just got a job working for the government, doing VISA intakes. It's something she thinks she'll really like, it pays VERY well and the benefits are incredible! How are your children and grandchildren doing? Best of luck with everything Mandy! Until next time......... Jim
  15. Mandyspike

    Mandyspike Active Member

    Hi Jim, How have you been this week? Good news about your Son and girlfriend who are doing alright for themselves.
    That must be an interesting job she has. Do you get on with her?
    My family are all doing well thank you. We looked after the two youngest grandchildren last night. They are very well behaved children.
    My Husband and I are sitting in a hotel room at the moment as we are preparing to attend a friend’s 60th birthday party. It’s a lovely room and we are looking forward to our get together. We are currently enjoying a bottle of bubbly between us
    I have felt better this week regarding my cfs but my sleep is still causing me problems. Having said that, I am keeping up with my dancing and I am loving it!! I have a permanent smile on my face all night long. It really is fab! I am beginning to get the hang of it now which I am happy about. It’s called Modern Jive. Check it out on YouTube.
    I had better get my glad rags on Jim as time is ticking on.
    Have a great evening
  16. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- I'm doing well. I have moved onto another stage of healing my gut. I started taking prebiotics, which are foods that feed the good bacteria in the gut and help them to multiply and push out the bad.

    I have only spent a short time with my son's girlfriend but she seems like a very nice person.

    Did you ever try the HRT to help you sleep? Just curious, I think you mentioned it a while ago. I took a look at the modern jive on youtube. It looks really interesting and fun!:cool::) Have you brought your husband along with you for the jive? The better you get at it, the more fun it will be I'll bet!

    I envy these people like the pro's on dancing with the stars, that get to dance for a living. I'll bet they get paid good money too! I'm happy to hear your cfs symptoms have improved. How was your fiends 60th birthday party? Did it go well? Until next time....enjoy the dancing!! :)........... Jim
  17. Mandyspike

    Mandyspike Active Member

    Hello Jim, I am very pleased to hear that you are doing ok. Do you feel that the prebiotic are really helping you?
    I am doing alright but continue to experience cfs symptoms, very mildly but they are there without a doubt.
    I have an appointment with my Doctor on Tuesday morning to discuss HRT. I really don’t want to go down that road Jim but the insomnia is pretty bad. I am having to take extra sleeping tablets and that’s so not good for me. I feel stuck between the devil and the deep blue sea. I am looking forward to seeing my GP to hopefully get myself sorted. I will let you know how I get on. If I do start the replacement therapy I don’t expect t it to work over night. I have to be a patient patient lol.
    I went dancing last night. OMG it is absolutely wonderful!! I am laughing all night long as my partners lead me around the dance floor. I can’t tell you the thrill it gives me. I would go every night if I could.
    My Husband would love to join me if it was possible but unfortunately in 2004 he was diagnosed with a brain tumour which has left him slightly disabled. He can walk around only with the aid of a walking stick so is restricted in what he can do. It’s such a shame. He was 30 when he had it removed. He is only 43, 17 years my junior. We have been together 20 years and are still going strong despite what people thought at the time.
    He has no problems with me going and enjoying myself. He is very good like that.
    Well I have another email to write to my cousin so I will leave you here.
    Good to know you approve of your Sons girlfriend.
    Take care of yourself
  18. ljimbo42

    ljimbo42 Active Member

    Hello Mandy- I do feel like the prebiotics are helping me, they seem to have given me a little more energy. The thing
    about prebiotics is, the longer you take them, the better they work. I haven't been taking them very long and I'm still taking a low dose of only 2 grams a day. The other thing I want to mention is charcoal capsules.

    They soak up the toxins from bad bacteria in the gut and therefore relieve symptoms. I went into a flare 2 days ago, so I lowered the amount of herbs I was taking to kill off the bacteria, which helped a little. This morning I took 1 capsule of charcoal on an empty stomach and within an hour my flare was almost completely gone!! Amazing!

    The dancing you do seems like such a good time. When I was healthier I used to love to dance. I would go to a local club and dance as much as my feet could take!:D The type of dancing you are doing also looks like it's soooo much fun. If you want to know what type of prebiotic is best just let me know. Charcoal capsules can be bought at any health food store or even Wal-Mart if you have any around your neck of the woods.;)

    Take good care Mandy and keep on dancing!!:)

  19. hangininthere

    hangininthere Well-Known Member

    Hi Everyone. I enjoy reading your posts on this thread.

    I just wanted to add that I, too, take a charcoal capsule when I'm feeling toxin overload and wretched.

    It soaks up the toxins just like it does at the emergency room with drug overdoses.

    It snaps me out of it.

    ljimbo42 likes this.
  20. Mandyspike

    Mandyspike Active Member

    Hello, I will definitely try the charcoal, it’s sounds like good stuff. We don’t have a Wal Mart where we live but I am sure our local health store could supply me with them.
    Yes Jim let me know which prebiotic to choose. I will certainly give it ago. It’s doing you good which is very encouraging!
    I started on HRT on the 7th November. My Doctor told me that I would start to feel the benefits after about 10 day’s.
    Today I am pleased to say I have had no hot flashes at all which believe me is amazing!!
    At the moment I am still suffering with my insomnia. Things haven’t changed in that department but hey, it’s early days.
    Mild cfs symptoms have been with me again for a few weeks now. I thought it was too good to be true, but like I have said in the past, I am not letting it stop me from my dancing. I participated last night and I never stopped dancing for two and a half hours. OMG !!! I am so glad my friend invited me to go along with her that time. It’s given me a whole new lease of life!
    Things to do now so I will say my goodbyes.
    Keep well