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After reading Rachel’s post on D-Ribose, i decided to stop taking it for three weeks to see what happens. That was a week ago. Unfortunately i have had a cold virus for the last week and been feeling less than great, although not really much worse energy-wise, just enduring some nasty symptoms and sleeping at odd times as my sore throat and coughing kept me awake at night. Anyway i don’t think there has been any effect so far of stopping the D-Ribose.
I have been taking it for a quite a long time now. I have blogged about it before, in fact, from the first post of this blog! http://ashy00.wordpress.com/2008/05/08/hello-world/
http://ashy00.wordpress.com/2008/05/18/from-fatigued-to-well-fatigued/
http://ashy00.wordpress.com/2008/08/16/d-ribose-and-other-things-i-take-update/
I have had short breaks from it before, where i have usually felt more aches, particularly in the thigh area. I used to have a lot of heaviness in my legs and thigh aching, and although this year has been pretty bad ME-wise (or is it POTS-wise?!), this is one symptoms that has been a lot better in general (unless i actually use those muscles). Interestingly I think my mood has been better this year as well (except when going through DLA and other dramas which has lead to low moods, frustration, stress and exhaustion, but i have had less what i would term “proper” depression where i could not see the reason). I think i was particularly depressed in the period before starting the blog last year, and this did seem to improve dramatically at the time i started the D-Ribose (or was it blogging? Or was it the sunshine and spring! Who knows!). So i will be keeping an eye on that also… I feel fine right now mood wise so that’s a good start.
The reason i am only doing it for three weeks, then plan to start taking it again, is that i think the effects will be be delayed and i need it to be working for me again in six weeks or so as my sister is getting married, which will involve me travelling and overdoing myself in various ways, so i need all the functionality i can get!
So we will see if there is any noticeable change from not taking it for three weeks… it is hard to judge the impact energy-wise. I did not feel much improvement on that level for quite a while after starting to take it, and i hardly have much stamina in general, so it may not have much to do with it…
Another reason i am stopping it, is that some people find it upsets their digestive system and mine has been really playing up recently, which has made me feel really weak and lacklustre. If it is getting worse, the D-Ribose may not be helping… Interestingly it seems to have been a bit better the last week, while i had my virus. Either the virus caused the bad flare up beforehand (although it has been pretty bad for a while now, that week was really unpleasant), or my body likes a high sugar diet of cough mixture, throat losengers etc! I was getting really sick of feeling all sugary by the end of it and am so glad to be feeling better! Sure my teeth are also pleased…
So, i will see what happens in these three weeks and in the weeks after re-starting it, and see what i want to do in future, based on that. I don’t want to take stuff when there is little point, there is always some impact (financial or health-wise) and the gout association with D-Ribose highlighted by Rachel is not good, i am told it is in my Mum’s family and it sounds nasty!
It is so hard to know whether a supplement is helping or not when symptoms come and go and levels of health fluctuate hour to hour anyway… it is also easy to get stuck taking something, as it is never a good time to risk feeling worse by stopping it! Will i be any the wiser after my experiments? We shall see…
Newsflash!
I have started a new blog which is focussed on my creative activites… It is called Energy Sparks: Check it out!
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 
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!?
Well, I did promise to write about CBT, a contentious topic for us people with ME (pwme)…
This post has been really hard to write, partly because I am so drained of all energy from going to CBT on Monday (It is now Thursday and I have been writing this gradually since) and partly because it is hard to write coherently about something that I am finding is linked to a lot of stress, anger, frustration, powerlessness etc. I am hoping that writing this, although draining in itself, will be more therapeutic than CBT has been so far… ha ha.
It (Cognitive Behavioural Therapy) is hailed by some as the one treatment that research has shown to be effective (but did these people who got better really have ME? Would they have improved anyway?), it is recommended in the NICE guidelines for treatment of CFS/ME but there is also a lot of evidence that it is unhelpful, no better than a placebo, or may improve people’s mental wellbeing/coping abilities but they are still as physically ill as before… see www.theoneclickgroup.co.uk and search for CBT and you will see some recent research and debate…
It also seems to be seen as a primary treatment option for this condition, which angers pwme as much as it would anger anyone with a serious physical illness… It apparently costs the NHS about £100 per CBT session so many people think that maybe focussing all that cash on physical investigations/research may be more worthwhile. I am sure it is very effective for mental health issues and for helping some people deal with their illness, but a cure it is not.
So, I had my second session and it was ok. Not much else to say to describe it really… nothing much of any excitement happened! I don’t think we have got started properly yet as we just seem to be collecting facts…
In the first session we discussed (or rather I was bombarded with questions – normal counselling, it seems, this is not!) about the time I originally got ill up until the present (a period of over 9 years), and this time we discussed all times before I got ill. I did get a bit upset talking about the time immediately before I got ill, as things were going particularly well for me then, but apart from that the session was all run of the mill. As most pwme will attest, we have to narrate our lives and histories over and over again to every new health professional we come into contact with and it just seems like going over the same old ground… While my CBT guy seems “enlightened” and does not seem to think CBT will be a miracle cure (but may help me to cope with my life better) he does seem to also be trying to figure out the mystery of it as well, he can’t resist it. They never can…
Guess what Mr Psychologist? No one who came before you made any startling discoveries about what caused my illness, but have a good rummage about anyway, be my guest…
He asked me questions about my personality… I can’t remember the question but basically was I the sort to run myself into the ground by overachieving, not relaxing, being wound up etc… Well, sorry to say that although I was young and passionate about life, threw myself into whatever I did with enthusiasm, I don’t think to any extreme that would have made me this ill… I get the feeling that it would be very convenient if I was a classic Type A personality then we would have something to work on. Even if I was, living with ME for all these years has changed me and my personality forever.
He asked me about my home life growing up, and unfortunately, it seems, my childhood does not seem to be any more unhappy/traumatic than most people’s (was your mother at home when you were growing up? er, yes, and my dad worked from home too!). Yes, I have had my share of difficult times but who hasn’t? When I try to say that the time just prior to getting ill was actually one of the best I had had for years, I am viewed with scepticism… (am I delusional now? or is it just disappointment that they can’t find anything/anyone (me) to blame…)
At the end of the session he asked me to write a diary for a week and to put in what I do each day, and also mark each activity with scores of 1-10: my mood, how much “joy” I am getting out of doing it (as opposed to before I got ill, I think), how much energy I have when doing it and afterwards, any major symptoms, how much of a sense of achievement I have from doing it, etc etc. He then said that we can look at it and he will be “another head” to be used to look at these problems and see if we can improve anything. All well and good in theory, but even he does not seem very enthusiastic. But maybe the diary will at least give him an idea of the severity of my condition which he does not seem to have grasped yet… maybe I will give him a copy of the one I did a few weeks ago for my DLA application, or one I did when I was attending the hospital group as well, just for good measure.
I may seem very negative about this whole thing, and unwilling to help myself. I do have problems coping with my illness and am getting increasingly frequent bouts of depression and sometimes anxiety too. But these are linked to times when I have an increase in symptoms and illness severity and I am just unsure if I am willing to give so much energy to this as an attempt to improve these things or whether I would rather see a friend, go out somewhere, get a massage, read a good book, etc instead… If I am going to overdo it, I would rather blow my energy on something with a feel good factor about it! It seems to take so much energy to get someone to understand my illness and how it affects me as a starting point for them to be able to engage with me, with no promises of it being anything more than a pointless exercise. I am trying to be open minded and “trust the process” but it is causing me a lot of stress already.
Unfortunately over the years I have had such bad experiences with psychologist-types (from NHS, insurance company etc) that I really am coming into this with “baggage”… I need therapy to get over my traumas from previous “therapy”… oh dear! After the first CBT session I got quite worked up about things he had said and judgements I could see him making about me (not very ill, looks fine, possibly in a “benefits trap” – yes he used that phrase) and had a bit of an anxiety attack… I don’t really care about what he thinks about me but what his report will say could matter, see HPI below…
Another reason to feel negative is how completely draining it is. Monday after the session I had a lie down but it was nearly tea time and I did not want to sleep so late on as it would affect my sleep pattern that night. I felt so awful that evening, brain completely mal-functioning and a struggle to watch TV even on quietly. The next day I was spent most of the afternoon in bed as I said in my little post, and I still feel terrible now. There are so many things I would rather have used that energy for than for telling someone about my childhood… again.
And so why am I even going? Well I have to go as it has been recommended by my HPI provider (HPI is an insurance payment – my employer has an insurance policy which means they give a proportion of your wages if you are on long term sick). So if I don’t go, it may seem as if I am not trying to help myself and they may then stop giving me my benefits… it was made quite clear to me that I need to comply with their treatments, as they want to “help me” and enable me to get back to work. While it was made clear that I should comply, they have not told me what my rights are to refuse treatment etc and what processes exist for any debate on this.
They are all nicey nicey on the surface though and ring me up all-the-time to check on how I am feeling about work, which feels like harassment sometimes. (I try to say it doesn’t matter how I feel about work as I am not in a position to even consider going! They seem to think that if I thought positively enough I would give it a go, and then everything would be ok… and cannot conceive that I physically cannot get there or at least, not without serious, distressing symptoms which would make me unable to function).
Although it is not a fortune I am getting, as I was only able to work part-time, I am very pleased to be getting this extra cash and don’t want it to stop, but how much can I put up with to keep getting it? If I say I don’t want to continue with CBT, what is next? Another doctors/psych visit (please no, I can’t cope with that), GET? (they already asked me if I have heard of it…), or just stop paying me? At what point do I say I can’t cope with the stress of the insurance company, and hand my notice in at work which will stop the payments? Why should I have to do this when I am still too ill to work and therefore entitled to the money? What about all the people in the same boat who desperately need the cash and do not have the choice? Is this what life without the NHS would be like? I feel coerced into having CBT. No, it has not been a trauma as yet, but it seems like such a waste of my energy. It is also caught up in all the baggage that I have due to the insurance company and the two doctors that they have sent to visit me, who originally recommended i go to CBT, whose visits I found very traumatic… I may talk about that another day!
Well, this has turned into a RANT! I better leave it there. I had better save some energy for my diary duties… hmm maybe I will start it tomorrow… or the next day… or the day after…
