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Well i have been meaning to update on this for ages, so to take my mind of the DLA dramas i thought i would do it now…

I have been taking D-Ribose for¬†months now (see previous posts), and although i was not sure to begin with i am quite sure now that it is having a small positive effect ūüėČ I did not take it for a couple of days recently as was waiting for a new supply and although those days were fine i had a few days afterwards where my thighs were so heavy it was quite a shock (I also felt very sleepy and could have slept all day and night, which was not how i usually am). Since taking the D-Ribose i have had a lot less of that real heaviness in my legs, where i have felt like manually lifting each leg in turn to go up a step and they feel like they are filled with lead. It is very rarely that bad now. I also think that although they do ache quite badly after i use the muscles, or have a stressful time where i must be tensing them without realising, it does not last as long. The recovery is quicker. In general they feel lighter. I feel less like i am wading through water perhaps.

I do not feel any difference after taking it, like¬†a buzz of extra energy or anything, and i am still unsure if i actually have any more energy – i have not seen any real improvement in how far i can walk, what i can do in a day¬†etc. although this is hard to measure with natural fluctuations, there is certainly no dramatic difference. I still have a lot of symptoms of muscular pain in back, or anywhere i use the muscles more than usual, bad tension headaches and neck pain and tenderness, lightheadedness, dizziness, temperature fluctuations, sensory overload, need to lie down/nap at usually twice each day etc etc etc no change in those areas…

The things that has been a LOT better¬†are my mood and my skin (particularly my face). I cannot really explain that and am not sure why. I have also been taking other supplements: Enzymatic Therapy Energy Revitalisation System & B vitamins, which is a powder (and tablets for b vits) with¬†many different things in, as well as CoQ10 &¬†L-carnetine and also i started taking all this stuff in the spring, just as i started being able to sit outside in the sun more, which i think really helped my skin as it improved almost immediately. My face was very dry and was irritated every time it got wet (eg when washing hair) and it was literally flaking off and started having patches on it that looked a bit like eczema or something, but it is so much better these days. It could be the vitamins or the sunshine or a combination of factors… who knows! I have reduced the vitamins to half a scoop each day and taking the tablets every other day, mainly for cost reasons and have not seen any effect, but i still take the standard dose of D-Ribose: 5mg twice a day.

I also take Vertase Omega369 tablets, but have taken them for years so not really worth mentioning!

So life is sometimes more pleasant but has not opened up particularly… i think the only way to see what impact the D-ribose is having is to stop it for a while and see the difference… which i will do at some point, but i am not sure when i want to risk feeling worse – there is never a good time to do that is there!?

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Warning! This blog discusses women’s issues,¬†periods etc!

Last week i went to see what i thought was a hormone specialist… it turned out to be the sexual health & contraception clinic – which was ok as my main query was about my periods…

My main issue is that my periods really drag me down. This is nothing new, but the last 6 months or so i have seen a definite pattern in my symptoms, in that i have a “better” week (or sometimes just a few days)¬†just before my period (when i can feel pretty good “at rest” and even manage to go out and about a little bit without major payback) and then just before my period i start to feel bad, feel very low in energy and everything is a struggle during my period, with all my bad symptoms of headaches, dizziness, muscle weakness, achiness, sensitivity to noise,¬†etc etc¬†and then it seems to take another couple of weeks to gradually get over the event and it all starts again.

The doctor i saw was a little confused as most people feel worse the week before, but has given me Norethisterone, a progestogen only pill to take, starting on my 5th day of my period and to take continuously (i am going back in 6 weeks or so for a check up). If it seems to agree with me, she said we could consider the Depo Injection… (very scared of that as heard it can have bad side effects and once you have it it can’t be undone). The idea is that my periods will cease and won’t drain me so much, although there may be some spotting and side effects (weight gain, bloating, spots, dizziness – just what i need!). They don’t know how it will affect me until i try so i am giving it a go, although not without some concerns. I am just hoping i don’t miss out on my¬†few good days a month as a result!

I¬†am willing to try it now as what i used to consider to be an ok/average day is now the highlight of my month and my general level of functioning has gone way down. My hormones may not have much to do with this but my period seems to be just one more burden on top of all the others that i really could do without. Unfortunately there does not seem to be a magic answer so i may be making things even worse but don’t know til i try.

Progestogensare like natural progesterone but are synthetic hormones and are not without controversy and i am not entirely comfortable with “polluting” my body and messing about withit when it is evidently already struggling to function, but it is worth a try. I also hate taking things then wondering if my odd symptoms are due to side effects of a drug or if they are the ME, and not knowing how i would be feeling without taking it…

Dr Sarah Myhill¬†does not recommend people with ME take the pill, but she does not really talk about what to do about period hell either so i don’t see any obvious alternatives! She talks more about contraception, which is irrelevant to me as a lesbian. She does say Progestogens can cause depression. I have not been depressed the last couple of months so will be suspicious if i suddenly get down. I have been taking Agnus Castus for a long time, which is a herbal remedy and which definitely helps with keeping periods regular and i think make mine last for less days as well. I had stopped taking it last month in case the hospital wanted to take any blood tests and my period was late this time, which has not happened in a long time, so i think it certainly is worth a try for anyone not on the pill who has issues with PMT etc. (Kira brand has seemed best to me).

So, my period came today! I am so happy as it is 3 days late and have been feeling very premenstrual, as well as having bad (and different to usual) leg pains – from my hips and down the sides into my knees and beyond! Also i usually get bleeding gums when i clean my teeth around the time of my period (who knows why) but yesterday when i got out of bed in the afternoon and sat in the next room chatting to¬†my girlfriend,¬†my gum spontaneously started bleeding into my mouth! It stopped quite quickly but was quite copious there for a minute. Yuk. I even started looking through the kitchen cupboard yesterday and throwing out all the out of date rice, dried beans, etc. “Nov 2007? looks ok… 2006 throw it out!” typical PMT behaviour…

This means that i need to start taking the new tablets on Saturday… 3 times a day! Better make a ticky chart or i will forget whether i have taken them or not… I am just hoping that i will never have to be that woman again who constantly talks about her periods, when she is due, how bad she feels, blah blah so boring, but recently whenever anything is happening (an appointment, visitor, etc) i have to check my diary and say whether there is any chance i will be feeling even half up to it… but how much of¬†a long term solution is taking this pill i wonder? Surely i can’t just take it forever? How messed up will my hormones be after taking it? Hmm.

The other thing that i wanted to talk to the hormone specialist about (turns out i need to see a separate Endocrinologist for this) is to discuss the chapter in Fatigued to Fantastic! about hormones and ME (see previous post). The doctor i saw at the sexual health clinic said that there is a doctor at a local hospital¬†who is interested in people who are slightly sub-optimal in various hormones and the effect that can have but that she did not think they would try treating me even if i am as they tend to have a “hands off” approach. This means “do nothing in case you are sued” approach, or a “NICE guidelines say NO if you have ME” approach, i can only assume… So if Dr Teitlebaum is right about hormones and ME/CFS then i will probably never know. I could try to get referred to that doctor but i don’t expect there is a lot of point in wasting my energy and taxi money. This is a bit disheartening as i am doing everything else in the book (taking supplements for my mitochondria etc) but if there is a hormonal problem holding me back i can’t do anything about it myself… what is the point of trying to help myself if i can’t get any professional support/expertise?

Well it is one week since i started taking my energy revitalisation vitamin power stuff, along with CoQ10, L-Carnetine, B-vitamins etc and over a week since i started to take D-Ribose, all as recommended in the book From Fatigued to Fantastic!

Although you are not supposed to feel any better so quickly i am a bit disappointed to have missed out on the two day high reported by Rachel!

I have had the odd moment of feeling good this last week, although not like real “lift off”, just happiness to have a whole day without head pains and so on… although i have had them most days and also bad heaviness/aching in my legs and back¬†& arm pains that feel muscular and it’s a bit worse than usual… so if the d-ribose helps with muscular recovery then what is causing that? (I think tension caused by going to CBT and thinking about it too much may be partly to blame for the muscular aches¬†– my thighs must tense when i am stressed as often they shake/tremble/ache after i speak to people intensely… wierd!).¬†Walking the dog for even 10 minutes has felt almost impossible most days and i have shuffled to the nearest bench, told her to “get on with it”¬†and had trouble getting up again. So maybe next week if these symptoms ease i will be able to see it as “proof” something is having an effect!

I am not too downhearted about it, it’s early days¬†and i am not expecting miracles, but i am hoping i find my tasks this week is a bit easier to complete… fingers crossed!

Well, this is my first post… on my first blog… it is also my first day of taking D-Ribose…

A¬†friend of mine bought me a book called “From Fatigued to Fantastic” by Dr Teitlebaum and she has been taking it for 3 weeks so far (see her blog: http://chronicallyme.wordpress.com/. I had heard of¬†D-Ribose before, in Dr Sarah Myhill’s CFS/ME book: http://www.drmyhill.co.uk/articles.cfm?subject=Fatigue¬†and thought what do i have to lose?

I have been so full of despair in recent weeks but after reading the book i do feel a sense of Hope returning, and am pleased to be doing something constructive…¬†although it is mixed with the feeling that i will not be able to fully try everything in the book (which is american) as a whole section is about hormones and taking hormonal supplements and getting certain tests done, which i doubt i can get via the NHS, and i don’t want to¬†mess about with that kind of stuff unsupervised…¬†I am hopefully going to see a hormone specialist soon as I have noticed quite dramatic fluctuations in my symptoms based on my monthly cycle recently¬†and my doc did not know what to do about it, so maybe i can talk to the specialist about the book and it’s contents then… finger’s crossed they are open minded.

I have ordered lots of expensive nutritional supplements, including the D-ribose so that is a good start. I will be happy to get even a small improvement in quality of life as recently my life has become very small & to get further than ten minutes from my house by foot or car is a rare and amazing event. I have been really struggling to get through each day. Things have seemed to be just getting slowly worse and worse and i would really like to see a change in direction!

I feel i have been living without much Hope recently and i am unsure if that has been good for me. I can’t help but have a bit of an antagonistic relationship with hope these days: it seems at odds with Acceptance somehow.

Up until i became too ill to work again i felt i was on a very slow path to recovery as i had never properly relapsed like others seemed to; once i did i had to face the fact that after having this illness for 7 years there was a chance that i would always have it.

It seems obvious, but up until this point (when i asked my specialist straight out how many people who had been ill this long got fully better again and he said something along the lines of “not many – you will probably always be affected by it but may improve a bit”) all medical and other people had said to me that “most people get better”. In fact only about 10% of people with ME totally recover i read recently, many others improve to a good level of functionning but not to previous levels of health and about 20% stay seriously disabled, or even decline in health. (this is just from memory so don’t quote me!).

Why do medical professionals continuously say i will get better? Do they think i need to believe that and need to keep Hope? (This is especially galling when they only offer “Lifestyle Management” and don’t seem open to even trying certain tests or treatments which could help). After 9 years¬†some of them¬†still say it. It is the easy thing to say, but i feel it is also important to¬†accept my life for what it is and not be waiting to be well to live it. I try to live it as well as i can within my limits, as i don’t know how i will be tomorrow or next year. Things could get (and have got) worse!

So, i had never given up on Hope completely as i want to be well with all by heart and soul, but maybe my hopes are smaller now. I just want to be able to get out of the house a bit more, be able to socialise more, be able to cope with short drives and be able to visit friends and family on the train occasionally… These things when i read them don’t seem small at all but they would be nice, wouldn’t they?

Dr T – i hope you know what you are talking about… you got my hopes up and i don’t need them dashed again…

ME/CFS Awareness

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