The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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New M.E/cfs diagnosis

Discussion in 'General ME/CFS Discussion' started by Pinkheaven, Sep 12, 2016.

  1. Pinkheaven

    Pinkheaven

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    Hi i was recently diagnosed with M.E and fibromyalgia and ive been researching it,it seems i have all the symptoms POTS,unrestful sleep, a twired feeling, flu like symptoms, PEM , exercise intolerance,brain fog and stomach issues.Oh and chronic pain.My rheumathologist diagnosed me last month and im still getting used to the fact that i am housebound M.E sufferer.Does anyone have treatment suggestions? I'm on painkillers and stomach meds and heart meds for the racing heart i get with POTS and valoid for the dizziness sick feeling.

    Im not sure what can help and i have zero support from anyone in my life so i have to suffer alone.Somedays i cant get out of bed so ill be in bed nearly all of the time.i dont eat much as its too tiring to cook.Any tips on how to make my life easier will be much appreciated.I am in the republic of ireland and i was first unofficially diagnosed by a g.p of mine at the time about 6 years ago roughly, i got swine flu and then was immediately ill with fatigue and lingering flu like symptoms etc.What im looking for is tips and advice about M.E or blogs etc i can follow and to make new friends (hopefully)
     
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  2. aaron_c

    aaron_c Senior Member

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    @Hip has a good guide on testing and treatment options, and since it sounds like your onset was clearly virus-related, that suggests a direction for treatment. Assuming you can find a doctor willing to work with you, and assuming you can get the testing and meds you might want in Ireland.

    Some kind of vitamin protocol seems to be helpful for a lot of people, myself included. I prefer to build off of Rich Van Konynenburg's Simplified Methylation Protocol. It's old by now, and I'm not sure if anyone follows it to the letter, but until someone picks up where he left off, it seems like a better place to start learning about that stuff than, say, Amy Yasko.

    I'm not sure what your health and finances will allow you to do. I know that things are much harder for people without much money or support... In any case, welcome to phoenixrising.
     
    Hip likes this.
  3. Pinkheaven

    Pinkheaven

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    I love the guide it explains everything perfectly and love the format of the info and the style of the webpage :)I have my gp and i dont know what he wants to do with me treatment wise.He isnt any good with treatments for pain and fatigue.Rich Van Konynenburg's Simplified Methylation Protocol. I really like the sound of the vitamin protocol.I am going to try it out and i will see what happens.I don't have much money im on disability and im in ireland so no M.E experts here( as far as i know)Thanks you so much for your advice and tips and well everything i hope i can get these vitamins and start the protocol and get better.
     
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  4. Pinkheaven

    Pinkheaven

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    Turns out the vitamins for the protocol are too expensive and i cant follow this protocol due to lack of funds :(
     
  5. Luther Blissett

    Luther Blissett Senior Member

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    Hi and welcome @Pinkheaven :hug:.

    One of the best things I was told to do was to rest. A quick rule of thumb I was given was to rest completely for the same time as I had been doing anything, and to try to resist activity that would be longer than 30 mins.

    If you search the forum for the word 'pacing' you should find plenty of advice. It's the cheapest way of not making your symptoms worse, but takes a bit of getting used to.

    I found it was easier to rest when I learned to meditate (plenty of free videos of guided meditations out there), but that's a really personal thing, anything that helps you lie down and rest is going to be helpful.

    Don't be afraid to ask questions here, even if you think they are silly, it's a really helpful and supportive forum.
     
  6. Pinkheaven

    Pinkheaven

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    I have been trying to rest more.I still have to get my head around pacing myself but i think ive got it figured out.Except for the resistance of an activity for longer than 30mins i went to a relaxation class on monday and i was exhausted and had a seizure-my bodys way of complaining.I do like your idea for guided meditations i will look into them ty.What is the easiest protocol to follow?oh and cheapest cause i dont have much money...
     
    Luther Blissett likes this.
  7. purrsian

    purrsian Senior Member

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    Hi Pinkheaven, I'm sorry to hear that you have no support from family/friends. I found that showing some loved ones the spoon theory helped them understand better (www.butyoudontlooksick.com) - it also might help you understand yourself a bit more.

    I'm not much help on the treatments front, as I haven't had too much success in finding someone to treat me with more than just vitamin injections. However, I do have a few lifestyle suggestions that help me function in everyday activities.

    1. Recently bought a shower stool. Best investment ever. Especially since you also have the POTS symptoms. Showering can be hard and when I was sicker, I sometimes didn't shower every day purely because it was so exhausting. Sitting on the floor is not great (germs, big issue for girls especially) but this stool has been wonderful at letting me shower without needing a half hour recovery rest afterwards.
    2. Some kind of activity monitor. I have an Apple Watch which monitors activity levels and gives the amount of kJ/calories used per day, and you can view your levels over the days/weeks/months via your phone. This gives me an objective view of how well/poor I'm going overall. Also, it has a heart rate monitor - if you can't afford something like the Apple Watch, it can be worth it to find a cheap heart rate monitor so you can identify which symptoms are POTS related. I've found I can better identify the POTS symptoms now, which allows me to alter what I'm doing sooner, rather than try to power through and then make myself worse.
    3. Timers and alarms. I keep my phone handy as I go from room to room throughout the day, mostly so I don't need to get up for it. I use alarms to remind me to take my tablets (brain fog ensures I don't remember always) and I use the snooze button until I actually get up to go do it, otherwise I'll forget. I also sometimes use timers in order to pace myself and ensure I'm not overdoing it. It also helps to feel like you've achieved something - if you can do 5 mins of tidying up your day's mess, or even just 2 mins, you've done something productive without overdoing it like we are often prone to do.
    4. I use water bottles to ensure I always have enough water handy, as I don't like getting up if I feel bad. It's also a handy measure to ensure you drink enough in the day. I aim for 4 x 600mL bottles. With POTS, it's best to ensure you are always well hydrated.
    5. Avoid temperature extremes. Being in Ireland, I assume heat isn't too much of an issue lol but you should definitely try to avoid becoming too cold. When you get cold, your body needs to work harder to keep your temperature up. When we have such limited energy resources, we don't want to waste them on maintaining body temperature when we can make sure we're always rugged up in the cold.
    6. Have easy to prepare meals. We use frozen meals a lot, Aldi has some delicious and cheap ones. 2 minute noodles if you need, pasta packs, frozen pizzas or other frozen meals you can just pop in the oven. We have an air fryer and almost exclusively use that now, as it's much faster. I also like to keep easy snacks handy like muesli bars, as sometimes I just need to eat something immediately. Sometimes I'll just eat a tin of baked beans or even just plain bread if I'm too tired to put anything on it. Easy to prepare stuff isn't always the most nutritious (and nutrition is important for us all) but sometimes, it's just too hard to prepare anything more complex and at least you're getting something.

    Those are all I can think of right now, but they are probably the major things I'm currently doing to make my life more manageable.

    One really helpful thing I was told was that anyone with chronic illness/injury tends to go through a period of grief. It sounds weird, but it makes sense: we grieve the loss of the life we thought we would lead. So if you have periods of feeling sad, angry, useless, frustrated, or anything like that, it's ok. It's unfair as hell that we have to deal with CFS. It sucks. But everyone has something, no one's life is a fairy tale (as much as they'd like you to believe), and having such a difficult 'something' will make you a stronger, more aware and more thankful person.

    I hope that you can eventually find support from your loved ones, as it can be really helpful. The more you learn about your illness, the more equipped you'll be to educate them. Sometimes, no matter how hard you try, they don't understand. But please know that these forums are filled with very understanding and helpful people and even if you don't have the support of loved ones, you always have support of every single person on here. It's not the same, but it's something.
     
  8. purrsian

    purrsian Senior Member

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    Wow sorry that was so long! Just thought I'd add that I use guided meditations too, just search on YouTube, many different types. And I found the thread that people talk about the products they use to help them, I found it very helpful
    http://forums.phoenixrising.me/index.php?threads/products-that-make-your-life-easier.45610/
    My shower stool isn't actually a proper one, it's actually for gardening lol but it's plastic and it has little rubber things on the base, so it works. It was cheaper than a proper shower stool.
     
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  9. Pinkheaven

    Pinkheaven

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    i love the idea of a shower stool sometimes i have to shower sitting down on the shower tray.i will purchase a heart monitor or a cheap fitbit or something when i have saved enough.Awesome idea and thank you for the great advice.ill set timers and alarms which is an fantastic idea as i have a lot of brain fog and ill forget to do stuff.I normally drink a lot of soda a week but i probably should switch to water i drink a lot of tea as well,pots and pots of it in fact :)i ordered a lot of frozen food this week which is easy to make and doesnt take any effort as you said :)

    You are right about the grief stage.I am resentful of others for having so much energy and are able to do stuff i cant.But i have to accept what i have and realise my limits.Thank you for your help and support purrsian the post wasnt too long for me i found it extremely helpful.
    Ill have look for that stool on amazon thanks for the link :)
     
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  10. Luther Blissett

    Luther Blissett Senior Member

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    I don't follow a protocol, the only vitamins I use are Feroglobin from Vitabiotics, (these seem to stop the brain fog or lessen it) and calcium for my teeth. A bit of baking soda and sea salt added to water help me too. I would think the Vitabiotics should be available at general stores and supermarkets as well as chemists.

    A notepad or something like a whiteboard placed near the kettle or cupboard might help you remember things. As you like tea, It might be worth looking out for mugs that you can write on! I've seen chalk ones and pen ones with a penholder, or a plain white mug and a non permanent marker should work. A pillbox with the days on it helps me remember whether I've had any medication or not.

    For free meditations, http://www.freemindfulness.org/download . I found the body scan type helps with tense muscles and general relaxing, and the breath ones for calmness when you can't or don't want to lie down. They helped me at the beginning when it's hard to just relax without a thousand thoughts whizzing through your head. (You don't need a religion to do them if that kind of thing worries you. And if you have a religion they are compatible.)
     
  11. Hutan

    Hutan Senior Member

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    One small thing is to put your hot water (or hot water and a tea bag) into a thermos when you boil the kettle. Then you can keep the thermos with you and have a hot cup of tea whenever you want without getting up. I feel happy every time I pour out a cup while reclining in bed :). It saves a little money on electricity too.

    If you don't already, you might want to try other types of tea. Tea is good for us of course but all things in moderation. If you have room for a plant pot, lemon balm grows really easily and you only need one leaf to make a great tasting hot drink that is supposed to be healthy. Stinging nettles seem to grow everywhere, again, just one (spray-free) leaf makes a nice, healthy tea.

    Do you have a slow cooker? I like to throw things into it over the day as energy allows - chopped potatoes, tin of chopped tomato, onions and some cheap cuts of meat browned a bit if possible, herbs, maybe curry paste or some spices, veges, whatever and by evening there is a tasty hot meal, with plenty for the next day and to freeze.

    Even just potatoes are easy to cook in a slow cooker - wrap pre-washed potatoes in foil and put them in the cooker in the morning, with the temperature on low and by the evening you have beautiful baked potatoes for several days ahead. And you haven't had to stand watching them while they boiled or baked in the oven. You don't even have a pot to wash. A bit of butter and a small tin of tuna or salmon and some salad leaves or coleslaw and it's a passably healthy meal.

    So that's my cooking tips.

    Re treating ME - I have no idea. My only advice is to not beat yourself up if you don't have the funds or energy or support to research and try treatments. It's highly likely supplements or whatever or even expensive ME doctors won't help you in any significant way right now - healthy food and rest is more important. Lots of good things happening with ME research though - exciting times.
     
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  12. TiredSam

    TiredSam The wise nematode hibernates

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  13. ryan31337

    ryan31337 Senior Member

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    Hi @Pinkheaven,

    This is going to sound like the usual crap "eat healthier, sleep better" advice, but there is a very specific reason for it in the context of POTS that I haven't seen in the literature all that often...

    It's worth trying some simple experiments modulating your sugar and caffeine intake. Try going cold-turkey for just a few days, if your body is struggling you'll likely see an immediate improvement. To do it properly you can go full 'Atkins', but you would probably also benefit just from reducing carbs/sugar and making sure to always include protein/fats in your meals & snacks.

    We're all different but I have just stumbled onto this with help from an endocrinologist and the difference to my fatigue/brainfog from just lowering my carb intake is MASSIVE. In my case its likely all part of the hyperadrenergic POTS/dysautonomia. Check out 'reactive hypoglycemia' and 'adrenergic postprandial syndrome' for more info if you find it does help.

    All the best,
    Ryan
     
  14. taniaaust1

    taniaaust1

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    when you said you are on "heart medicine" for your POTS, I wonder if your doctor has put you onto the best thing. You may want to look into trialing Florinef which helps boost blood volume instead of being on a heart med to slow down heart rate in which you will still feel like crap if you have low blood volume involved with it. Low blood volume from POTS can give one a dizzy sick feeling and it may turn out to be that rather then the ME which is giving you that feeling.

    Also look into other POTS treatments too, there is a lot of different things a person can do for POTS including compression garments. If your doctor knows nothing about POTS, it may be good to try to seek out another dr who does for advice

    has Ireland got a ME/CFS society, if so try to contact them for dr recommendations.
    ....

    I suggest to learn how to cook some very very easy quick things so you dont use up too much energy in cooking. eg I like to cook chicken breasts in the microwave in just some water along with some frozen veg and then use the same container to eat from. (and the water I cooked the chicken in.. makes a nice soup so dont ditch it, try to pour it into a glass for a nourishing drink).

    as the other said that soda you are drinking, may not be good at all for you. I get dehydrated with sugar and that's the last thing you want to be going on when you have POTS. With POTS it is usually suggested to drink 3 Litres of WATER per day.
     
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  15. Pinkheaven

    Pinkheaven

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    I have a metal teapot that i make tea with real tea leaves(came with a steeper thing) so i have a teapot full of tea nearby nearly always :)I do need to purchase a slow cooker handy things they can be or so ive heard :)II mostly eat gluten free food apart from the odd pizza here and there.Most of the soda i drink is sugar free and caffeine free but i do get monster cans every now and again.I have problems with my blood pressure as well as low blood volume and racing heart and also palpatations.I am on propanolol 40mg.Yes i keep getting a dizzy sick feeling and its not pleasant.I actually have hypoglycemic attacks because i dont eat enough food .The cooking chicken in a microwave is a new thing for me i usually cook chicken dippers in the oven with frozen oven fries for 15 mins for my 1 meal a day.I can join the M.E trust and get advice from them.The water around here is horrid tasting and i like a bit of flavour to what im drinking.I am going to stick to getting a multivitamin tomorrow and taking that in hopes it will help in some way.Thank you all for your advice and help,it is much appreciated.
     
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  16. taniaaust1

    taniaaust1

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    I personally dont recommend multi vitamins (though if you are eatting only once a day it may be a good idea). The issue with multi vitamins is often they can have things in them which conflict are agonistic (whats that word?) with each other, have things in which arent supposed to be taken together and one will stop the absorption of the other. They also esp with us often have the wrong forms of some things. (eg some had the wrong form of D for me, the wrong form of B12 for me and the wrong kind of folate for me).

    In my case they were bad as it turned out I had high copper and they contained copper so taking them made my high copper worst (it was so high it was off the chart). And if you are low in D, usually a mixed multi vitamin wont give you enough. So often they a standard multi vitamin is a waste and not giving a person what they actually need and may just give a person a false sense of that they are getting what they need.

    Yucky tasting water can be made better by adding some lemon to it or lime to it. I buy something called "lime squeeze" which is lime juice in a squeeze bottle which doesnt tend to go off and i just add a couple of drops of that to my water.
     
    Last edited: Sep 13, 2016
  17. taniaaust1

    taniaaust1

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    propanolol doesnt help the body hold onto its fluids and hence blood volume.

    Your high BP may be high from the hyperandrenalic form of POTS and if this case is the case, a likely sign that your blood volume is too low.

    My BP goes up high when mine blood volume is way to low. When Im in hospital that is something they test to know whether they need to give me another bag of saline IV to get my BP down (usually that would be contraindicated in high BP but in the case of hyper POTS if the raise is due to too low blood volume it can be brought down by that).

    "Propranolol works to inhibit the actions of norepinephrine, a neurotransmitter " info from wiki

    From that it must work in the say way as the clonidine my specialist put me onto does. I take both clonidine (clonidine to stop the adrenaline spikes my hyper POTS causes) along with Florinef to boost my blood volume.
     
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  18. purrsian

    purrsian Senior Member

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    I'm glad it was so helpful, I remember how lost I felt in the beginning and it's not so nice!

    In the meantime while saving for a heart monitor or Fitbit, you can just feel your pulse at various times to get an idea of what symptoms correlate to POTS. My heart rate is about 70 lying down, 85 sitting and at least 110 standing. Sometimes when I am more fatigued, it's higher sitting, so I do actually get tired when all I'm doing is sitting. It's something I never realised till I looked at the heart rate, but now I know to rest at those times.

    The water is definitely a big benefit if you can change over from soda as much as possible. Plain water really assists the removal of bad stuff out of the body, and anything that makes your system work less hard is great. I also sometimes have green tea or a Chinese herbal tea with ginseng that's aimed at giving you more energy. Perhaps that could be beneficial to replace a cup of tea here and there (assuming you meant normal tea, not herbal).

    It's easier said than done to accept your limitations and accept what's happening, although you are realising you need to do so which is great. I remember always thinking 'I need to do this, I need to accept that' but then still feeling bad about things. It's especially hard at the beginning of your diagnosis, when everyone is still expecting you to do all the things they do. I still struggle with finding the balance between resting enough and doing enough to prevent deterioration and, when possible, to permit improvement. But things will become easier to cope with and you will gradually learn more about your health and limitations. I found the link TiredSam shared was really great in learning about what I could and couldn't do. One of the most important things is enough rest - I always felt I was wasting so much time, but it's not wasted because it's exactly what your body needs. Think of yourself as someone with a really terrible infection - you'd tell someone like that to rest and recuperate as their body needs to heal - that's exactly what we need.
     
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  19. hellytheelephant

    hellytheelephant Senior Member

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    Dear @Pinkheaven

    welcome to Phoenix Rising- the club no one wants to join....but everyone is glad they did :)

    You have a lot of info to process on here, so I will keep it short.

    Go gently and don't try to make too many changes at once...Ok, so for what it's worth, here is my best advice



    1) Eat as much fruit and veg as possible and avoid sugar and caffeine- but don't beat yourself up if you need to rely on pre-prepped foods.

    2) Electrolyte has really helped my POTS it's cheap and lasts ages https://www.amazon.co.uk/gp/product/B00L7WXIFE/ref=oh_aui_search_detailpage?ie=UTF8&psc=1

    3) Ask your GP for a referral to an occupational therapist- if it is the same as in UK you can borrow shower stools, over the bed table etc for FREE!

    4) Pacing- keep it simple- work out how much you can do BEFORE you would crash and set your limit at 50% of this.
    5) MOST IMPORTANT- Be kind to yourself and do something you enjoy everyday:thumbsup::balloons:

    Helly x
     
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  20. purrsian

    purrsian Senior Member

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    Hm I think I need to remind myself to do this... I still like to do things because I feel ok, then crash and realise I wasn't actually as well as I thought I was :rolleyes:
     

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