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Well, it seems there are several things going on so here’s a little update on each:

Haircut! I managed to go out on Saturday into town by taxi, to get my hair cut. It is so nice to have a proper cut as i have thick short hair it soon grows out of style into a mess, and i cannot be bothered/do not have energy to be styling it every time i get out of bed (two-three times a day!). It had been over 12 weeks since i last had it cut! I had a really nice friendly taxi driver and he took me both ways and my hairdresser was chatty too. This meant i had about two hours of conversation. I felt very lightheaded at times and knew i was overdoing it, but i REALLY enjoyed it, and being sociable 🙂 I coped ok in the salon with the noise, busy atmosphere, lights and music. I was nice to feel i was doing something in the “normal” way.

D-Ribose: RachelCreativeis back on her D-ribose, but after my three week trial i really cannot tell any definitive difference in my symptoms, although there is a lot of other things going on at the same time. I am stuck between wanting to be at my best for my sister’s wedding in 3-4 weeks so taking it just in case it helps even a little, and really not being bothered with it – particularly as i am experimenting with my diet so much. I would rather reintroduce a “new” food than introduce d-ribose and wait to see if it has any effect on my digestive system… so i think i am not going to take it for now.

Midodrine/POTS: It has been two weeks since i started to increase my dose of Midodrine. It has definitely been easier than last time i tried, with less nastly side effects. I think this is mainly due to the times i am taking it: more spaced out through the day… although i am going to try to continue upping the dose gradually a little more yet over the next few weeks. In general i think i am feeling a little stronger on this new dose as well, though my evening head and neck tension/pain has been worse. I hope this will ease off again. I may just be feeling stronger due to my digestive system improvements, who knows…

I am still getting some POTS symptoms, which i was reminded of yesterday when i was driven by my partner to a local small shop (5 minutes away in next village). I just fancied a little trip out of the house and felt ok. I walked up a couple of aisles and got what i wanted, then when standing at the till (there was a short delay as something went wrong with the items going through the till) i found myself really struggling to stand there. I sat on my walking stick seat which helped a little but just this small thing meant i had to go back to bed when i got home as i felt awful. It was partly due to “payback” from going out on Saturday to get my haircut, but still felt very much like the start of a POTS episode… there are definitely times now where i would be fine to go to a shop for ten minutes and pay at the till, but i still have to time it right and am often not as good as i imagine i will be when i actualy do it! It is easy to think i am SO much better when i am sitting at home, but in reality most things are still difficult. Baby steps…

IBS & the diet: The new diet is going well. After the fourth day of diarrhea after eating the oats, i took one Immodium (loperamide) tablet as i could not deal with it any longer and seemed to be losing weight fairly rapidly. After taking the tablet things have been much better and seem to have settled into a good pattern. My stomach is still achy and painful on occasion, but i think getting better every day. I am gradually introducing more things into my diet that “should” not cause any problems and so far so good.

I have eaten soya yogurt products, more ground nuts, fruit and seeds ground and cooked in my morning porridge, oh yes! gluten free porridge (rice and millet), avocado (my first raw fruit!), butternut squash soup, choc soya pudding, cornflakes, seed butter, rice pasta, a small piece of gluten free orange cake 🙂 …. and probably more new stuff… it has involved going to the supermarket and buying “special” products which can be pricier than the usual ones but i would not really have to do this if i was not going gluten free at the same time… after the oats i am being a bit careful about this issue, especially as my Mum finds she cannot eat gluten.

I have still not eaten any gluten since the “oats drama”, nor have i eaten any dairy products except a bit of egg in the cake. I am cooking rice and potato etc fresh and not allowing to cool (due to the potential resistant starch issues.) I am limiting very high fibre foods, or cooking small amounts of them well and mixing into the safe foods. I want to try some cheese at some point, but am not really missing the yogurt now that i am eating the soya version – just as nice.

I also want to try a bit of low fibre gluten/wheat products and see if i have a dramatic reaction like i did with the oats… i think i will wait a bit longer as things have only been going well for a few days. I need to try it out before my sister’s wedding weekend, but also with enough time to recover before going! Otherwise i may not be able to eat any of the wedding food! As a vegetarian, cheese sandwiches are staple fare at such times after all… finger’s crossed the oat thing was just a one-off, and not a sign that gluten in general is no good for me. We shall see…

Back exercise: I have been forgetting to do my back exercise recently, tut tut! I am still trying to do it though and will try harder! I think that because i am having more pain in other areas (shoulders, headaches) i am more focussed on that and don’t feel like lying on the floor and striking the pose… no excuses though!

Going out: I am going to try to go out on Friday early evening for a couple of hours to be sociable with a group of people in a cafe… cross your fingers for me to feel up to it?

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I went to the hospital today to see the POTS specialist. It was a good appointment, i felt my brain was working enough to get my head around what she was saying and also enough to be articulate, which helps.

I currently take midodrine twice a day, morning and lunchtime, at a low dose 2.5mg each time. I did double this dose for three weeks before, which caused all sorts of side effects and i felt awful so i contacted her (the specialist) and she said to go back to the original dose.

The plan now is to take an extra dose at tea time, as i told her i have a low point at about 4-5pm most days, so she thinks it is reasonable to try and see if another dose helps this slump. After trying this for a couple of weeks she wants me to try to take the odd extra dose in between, at times where i feel i need it, and see if this helps and how much i can tolerate.

I am keen to give it another try to up the dosage, as it has worked really well for me on the lower dose, and there are obviously still symptoms of it affecting me. Many of my worst symptoms have improved and life IS better, particularly “at rest” (in ways i have explained in previous posts so i will not repeat myself – now i have “tag cloud” in my left hand column you can click on “POTS” and read all about it!!).

I am to contact her if things are not going well with this plan or i need to check anything, otherwise i will see her in three months time and she says she will give me something else to try on top of the midodrine to try to improve things even more… which would be nice!

It was good to feel that she still thinks that improvements can be made and that much of my illness/symptoms could be still attributed to POTS and related autonomic malfunctions, despite the initial improvements of specific symptoms. She emphasised that we are at the start of a very slow  journey of improvement and seems to think we will get somewhere with it eventually. I really hope so!

I even got a new diagnosis out of the appointment today! I have… drum roll… Defecation Syncopy! Say it loud and proud! This information from the Student British Medical Journal mentions it, as well as other forms of syncope, which is quite interesting. I am not sure exactly whether POTS falls into the Vasovagal Syncope or the Postural Hypotension groups, or is a mixture, as both descriptions sound relevant to me… the defecation syncope seems to fall into the vasovagal group, and is obviously related to my existing problems.

I do not actually pass out, but i feel extra faint and dizzy and weak just before and when i have a bowel movement, and often go back to bed to recover. As my IBS has been getting worse, this has been affecting me more, although this has been happening for a long time, I did not think much about it. It just occurred to me that it may be relevant when i was asked if i get more symptoms after eating a meal (or other specific times), and i thought that no, it happens further down the line than that, so i thought i would mention it!

The Specialist said that she is a world leading expert on defecation syncopy! (she said this as if it was amusing, not in a “I am so clever” way, she is not like that at all) and that no-one knows how common it is as no-one speaks about it (except me evidently!). She said that tests have been done where they insert a bag up people’s bowels, and inflate it, and they just pass out!! She did not test me today 😉 She said that some people need cushions around the toilet and on the bath/sink edges near the toilet as they pass out and don’t want to crack their heads open on the way down… glad that it is not that extreme in me.

So the plan for this is to take another dose of midodrine when i get these symtoms (or feel the need!) and see if it helps…

She also gave me an interesting info sheet on IBS and diet, which included things about “Resistant Starches” which i had not heard of… basically it is a type of fibre that is not broken down in the small intestine, but ferments in the large intestine, causing wind, discomfort etc. It is good for people in general, but maybe not so good if you are having trouble digesting. The leaflet also lists dietary changes for each main symptom, rather than all IBS in general, so i think i may try to make some changes and see if it helps. I will write more about this in a separate post when i get chance later and have looked into it more.

All this means that my D-Ribose three week trial  may be hard to do, as if i start taking more Midodrine and change my diet a bit i may not be able to tell what impact the D-ribose is or isn’t having. Ahh well. I should have planned the timing better but that’s where being spontaneous gets you! I will do it anyway and see…

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…

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 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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