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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! https://ashy00.wordpress.com/2008/05/08/hello-world/

https://ashy00.wordpress.com/2008/05/18/from-fatigued-to-well-fatigued/

https://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…

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I am starting to do some exercises… only very small ones and only when i feel up to it, so not even every day, although i will try. I have been trying to ask people (doctors, physios, alternative therapists) for ages to help me with my upper back pain and to help me strengthen my core muscles in my back in case any weaknesses that have built up there due to my life spent mostly sitting or lying are contributing to my problems, but no-one has been very helpful. I find holding myself up to sit or stand very energy consuming, uncomfortable and difficult and i am sure i am not using certain muscles enough that deal with these postures. Whether this is anything i can do anything about, i don’t know; as my muscles do not behave normally and tire very quickly and therefore cannot be strengthened when tired.

So anyway my mum has been given some physio exercises to build up core strength as she has back problems too. Also i am inspired to try by Rachel M who has gently built up some strength in her arms and shoulders and is now touching her toes!

The first things i am trying to do more often is to touch my toes, and to “hang” forward in this position a while to open up my shoulder blades as well as to stretch the backs of my legs (hamstrings?) as it is quite uncomfortable and i have to bend my knees in order to touch my toes at all. This is due to inactivity and inability to walk far and i don’t see why i cannot improve this very gently.

I also want to do the  yoga “pose of a child” as this also opens up my upper back and i really feel this doing some good in this, my most painful area. It makes my shoulder blades fall upwards (!) which is obviously not a postition they are used to as they feel almost as if they get stuck there and it hurts, so i don’t do it for long! Also my circulation is not good so i cannot stay like this for long and have to get up very carefully. It seems to make my thighs ache afterwards, who knows why.

I am also doing one where i point one elbow at the ceiling and one at the floor and link hands behind my head and stretch, then swap the arms around to do it the same both sides. No picture of that one… it is a bit odd but you may be able to work out what i mean. It is also supposed to stretch the shoulders etc. This is one of my Mum’s physio expercises.

There are lots of other things i would benefit from but i am starting with these…

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!?

This afternoon i had my first Hot Stones Massage. It was really good! I had it done just a few doors from my house, so not far to stagger home again and it is on special offer – £30 for all of August (usually£45) – and it lasted nearly one and half hours!

It was really nice because it covered practically my whole body and i was amazed by how many painful and tense areas i had – i knew my upper back, neck, scalp and shoulders were bad as i have been in quite a bit of pain and had daily headaches since coming back from the festival as it was hard to care for my posture when away from my usual chair, bed and travelling etc. – but i was amazed by how bad my leg muscles were and also in the bridge of my feet. My upper arms were also very sore. I knew my head was tense and i could have done with another half an hour just focussed on that, but apart from that the massage was very focussed where it was most needed… So i have booked another one for the same time next week 🙂 i can’t wait… i think that two in a row will mean that things have chance to improve much more: cumulative effect! I am going to try extra hard this week to keep my newly massaged body stretched, relaxed and massaged where i can to keep up the momentum!

The stones were really nice – they start off very hot but cool quite quickly so the person keeps leaving to swap them over so it is not like a normal massage where the hands barely leave you for the whole time, but you are left with the heat of the stone in-between times so it is still very relaxing. The stones are rubbed over you quite gently but it is supposedly the heat which penetrates into the muscle and releases the tensions. My back would not even click when i sat up and felt amazing, so i think it definately works! When she had done each foot she placed three little stones between my toes! That made me laugh – she said that quite a lot of people’s toes can’t hold them in place… a talent i didn’t know i had! Also after doing my arms she left a large stone in each hand, which was nice to hold.

Since i went to Scarborough i have had a new perspective on alternative therapies – i have tried quite a few before, but went through a phase of thinking what is the point, as however nice they are, none will ever “make me better” and you can spend so much money on them – but when in Scarborough and having a treatment of some kind each day i realised that the value gained from something that helps you to relax, takes you away temporarily from reality and gives you a sense of well-being and makes you feel good can be immense and although may not heal you in any absolute sense, can contribute to positive change on some level, even if it is just in mood. If it can help shake these tension headaches away i will be happy as i am taking painkillers every evening and i don’t feel comfortable with that for more than a couple of days in a row, but have had no choice lately. Obviously i can’t keep having a massage every week, but i think it is good to know it is there for when i really need it and so convenient being on my doorstep… roll on next Tuesday!

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!

ME/CFS Awareness

ME/CFS Awareness

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