You are currently browsing the monthly archive for December 2009.

*I have been writing this post for at least a couple of months, so it is a while now since the really bad itching attacks. It has been quite reasonable and well-behaved over the festive period, i am happy to report! But anyway, here follows an update on a very uncomfortable symptom flare up i have had these last few months… it really has felt like the last straw at times on top of every other symptom i have had during this difficult time…*

I have talked about my itchy skin problem before, see this post (mostly the second half). I did not mention Aquagenic Pruritus then because i had half forgotten about it, and half was not sure it was worth mentioning as a diagnosis in itself, though i explain the basic issues that constitute it. I found some information about it a long time ago and thought that it sounded like what i had, but when i went to the doctors they just said they had not heard of it, gave me some emollient to try using instead of soap in the bath, and that was that.

The last few months the itching has been bad. Very bad. It has been getting gradually worse. Usually it is just a bit itchy after a bath, but if i stick to my routines and rituals and shave my legs every other day it stays more or less under control. More recently it has been flaring up so that i have itching whenever i am in bed, and if i don’t shave every single day (even if i do). It has spread from my lower legs to my thighs and upper arms (where i don’t shave – it is not caused by that) and can be triggered by pressure of lying on the skin. Some clothing (for example putting on socks, jeans) can trigger an attack which can leave me sitting/lying waiting for the episode to end for some time. I would just note here as well that it is widespread pain, and feels under the skin, not your normal little itch that needs a scratch. It is a strange sensation but i am not sure that “itch” really covers how distressing it is!

It was all getting very stressful. This extra bathing/shaving/having attacks in bed several times per day was really dominating my life. There was only one sheet i could lie on in bed that was smooth enough not to create itching and pain, and the others are not exactly rough, just normal cotton sheets! It is often worse in autumn but never this bad, and never with so much itching that seemed unrelated to water. I mentioned it to my POTS specialist last visit and she said it was probably just another symptom of my Autonomic Nervous System not working properly, but she did not suggest anything i could do about it. She said it may be a side effect of my medication, but seeing as it is not new to me (and i have been on the medication, granted at lower doses for over a year with no obvious connection) i was doubtful. I was looking on the internet and rediscovered this Yahoo Group which has a messageboard with others who suffer from this painful itching too: On it i found some information about research that has been done (not a lot as it is a very rare condition) and found that one found that putting Bicarbonate of Soda into the bath helped some people. I tried it and YES! it has helped me!

It is not the whole answer. I am maybe back to where i was before this very bad period of the past few months. I still need to shave almost every day or it can be worse, and i am still lying on only the smoothest sheets but the attacks are milder and less stressful and long-lasting. I found when i had flu this last week it was worse, i think due to sweat (well it is water, even if i made it myself!) on my legs, maybe that washed away the bicarb effect or just triggered an itch response. Bicarb is alkaline so it may be that which helps, i do not know. I could not read the actual research paper, only the abstract, so any theories as to why it works and suggested amounts to use have passed me by. I use about half a tub in each bath (100g). Of course i cannot shower still, which limits my ability to go anywhere without access to a bath. It is also time-consuming to bath all the time, then lie down for a while and it’s all very energy-consuming as someone with ME. Pain and physical discomfort are very energy-sapping.

I did go to the doctors armed with printed off information about Aquagenic pruritus and hoped to get a dermatology referral, but i only saw a locum and he said i should wait to see a GP from the practice. He did give me a prescription for Capsaicin cream (which i asked to try, based on other research i read). I used it but i am not sure if i used too much or if more experimentation is required (i am not keen!). It seemed ok to begin with. I did a patch test and all seemed well for several hours so i put it all over my lower legs. That night my legs were hot and i had to keep putting them outside the covers to cool off. Even later the next day, when i thought the effect would have worn off i had a bath and it was so painful, like burning! Like bathing with sunburn! The cream’s active ingredient comes from chillies by the way! apparently with regular use the burning gets less, but i am not sure i will get that far. It was a change from itching but almost as unpleasant!

I would still like to discuss my options with a dermatologist. I doubt they know much about it as it is so rare, but they may be able to suggest something. My main problem is that my leg hair seems to be a trigger and I have looked into laser hair removal but it is very expensive. I am wondering how hard it would be to get it done on the NHS! I think it would be hard to justify as a health need, despite the very long time i have had these problems… I do not know how much benefit it would give me until i tried it really. Also the health warnings on the “do it yourself at home” laser machines are frighteningly long and i am not sure i want to risk damaging my skin or making the irritation worse. They also mention vascular problems which i may qualify as having. I need professional advice on it but i do not know if there is anyone who can understand my special circumstances…

I have been to the doctors since, but have not mentioned it as there have been other more pressing issues to discuss and time is always short. I need to make an appointment specifically to talk about this issue, but I am not sure when i will get to it. Probably next time it gets really bad i will move it up the priority list!

Well, I have got over the swine ‘flu, if that is what is was; at least i have no obvious symptoms now. My energy levels have not been great and over Xmas i have felt particularly bad in the mornings and had quite a lot of POTS symptoms early in the day, despite my medication. I have been sleeping until 10am or later, having breakfast and sitting for a while, then going back to bed (perhaps after a bath) until 2 or even 3pm. Only then has the day began and i have felt able to talk, watch tv, move around more easily etc. Some days i have felt reasonable for only very short periods of time, and a few have been a bit better with the whole evening being pretty good. My mum came to stay and my partner went to her family; so it was just me and Mum for a few days. She looked after me and gave me some massage and reflexology in small doses and it was very nice and relaxing.

She drove me to the beach on Xmas day and i sat on a cushion in a carrier bag on the frozen sand. The sea was a steely blue and the sun was setting (behind us, but the sky was nice colours anyway). It was nice to go somewhere. I enjoyed watching her play with the dog by throwing big chunks of seaweeds for her to run after. They had an intense play then we went back home. The moon was out, just a slither.

I hope i can reel my body clock back in soon. It is not that different from usual, as i always have to go back to bed for a sleep in the day, and try to make it as early as possible so as not to affect my sleep in the night, but waking up at about 9am would be better. Waking later is messing up my medication schedule and i keep forgetting if/when i have taken my tablets… not good! I think i have just needed more rest and had less stamina recently with my viral episodes, but i would like to get over that phase if at all possible and get some life back!

Just before Xmas i went to the doctors for a full blood count and ESR (Erythrocyte Sedimentation Rate). These are blood tests to look at inflammation and whether the body is fighting infection. I went to the doctors because my lymph nodes are really lumpy in my groin (and in my neck but that is more usual for me). The results came back that i may be anaemia  (this is the only information i have been given so i assume the rest was normal – no lymphoma then? Phew.) so i had to go back for the second type of iron test to check my ferritin which is the body’s stored iron. This happened last time as well and i had the same result. I have not had the second result back but i imagine my ferritin is a bit low also, as it was last time. Last time they did not suggest i took iron supplementation as it was only borderline low. Seeing as i have had no periods since then i am a little surprised it does not seem to have improved, so i will be taking some iron tablets myself whether they advise it or not, once the result comes through. I do take a multivitamin already but it does not have much iron in it. My limited diet is obviously leaving me short, despite my efforts. I wonder what else i am deficient in? The nurse did say that having a virus can cause your iron levels to dip… apart from having something most of this year, it could be said (as my Mum pointed out) i have been fighting something for nearly 11 years! So i thought that was funny. Maybe i also need more nutrients for my body to cope with this attacked/stressed/unwell state?

I am going back to see the POTS specialist mid-January. Last time i went it was all very gloomy as things had been so bad in those past 3 months before the appointment. These past three months have been much the same (though with slightly different problems) and i am sad to have to go back and report no progress at all, and that actually i cannot tell i am on a higher dose. Maybe all this other stuff is preventing progress. I wonder if she will have anything to suggest/say.

I want to go back to the Osteopath in the New Year. I am not sure that i am well enough for regular appointments but i can only try it and see. I feel i have not really given it a proper go yet as i have only been twice (?) as i had to keep cancelling due to not being well enough to go. I would go every three weeks if well enough, but as i would have to rest beforehand and it wipes me out/gives me headaches afterwards it really takes a lot out of my schedule. I think i will try to get my hair cut, go to the hospital appointment and do any other things that are pressing before i start back with him. It will take over/dominate my opportunities for going out really, unless things improve a bit. (That would be nice). I would like to be able to do some non-health-related things a bit more often as they are few and far between of late.

Oh, i did go to the nature reserve with my partner before xmas and it was a beautiful sunny icy day. I took some pictures of a swan, which waddled up close to me. I have not had them developed yet… it was exciting (to be with camera) and so good to go out together for a little walk.

So, there have been some nice times grabbed here and there! It is always hard to not be operating well when there is some occasion or something happening. To have visitors only adds to the feeling that there are so many things we could be doing if i was only feeling a little better. I was so relieved to not have to travel this year – i really don’t think i could have – but also i cannot be left alone when this bad, so i am so pleased my Mum could come to stay. We had a relaxed and parsnip-happy time. I also managed a therapeutic cry which though initially exhausting left me feeling much better… good to let it out (thanks mum).

I think I do… my partner got ill first and she is still not totally better yet but is on the mend, while i am coming down with it. I have not been feeling good since i was sick that night (was it 3 weeks ago?) and have had the occasional night of feeling sick again but luckily not actually being sick. This past week it seemed to be getting worse not better and i was off my food, had a runny nose and was more achy. I did not feel well and knew something was up. Now i am proper ill with sweating (temperature), very sore throat, cough, aches, generally feeling weak and dizzy etc.

I had the flu jab for normal flu a few weeks ago so i reckon it must be swine flu, unless it is just another random virus. It is not a cold though and my partner has been really ill with it and she usually just works on through a cold. This time she has had several days off work. Not even working at home – literally lying in bed unable to do much at all. I worry how i will be tomorrow as today was not fun but i don’t think the worst has really hit yet – I managed a bath this afternoon with that in mind (do it while i am able) and don’t feel too bad right now after a sleep this afternoon. We shall see.

I am a little concerned about how long i have been feeling ill for. I feel that i have been under viral attack for quite some time now without a break. My lymph nodes in my groin area are very lumpy. I noticed them about 3 months ago as they were quite sore. I have never noticed them being lumpy “down there” before, only in my neck, so i went to the doctors. After the first try (we have no time to look at them now, said the doctor) i went back 3 weeks later and someone had a feel of them. They said i need blood tests done (full blood count and ESR) but that won’t happen until 18th December as there were no appointments due to swine flu – this was a couple of weeks ago, so another 3 week wait for that. I wonder how having this virus will affect the blood test results and if it is worth getting it done when i am ill in another way. They will probably just show i have a virus and tell me to come back to repeat the tests in x amount of time. Maybe i will have recovered by end of next week. Maybe pigs will fly!

I considered getting Tamiflu, but i decided not to bother. It seems that is doesn’t make a huge difference (cuts length of illness by one day?!) and I don’t like taking stuff for no reason.  I wish that the doctors would actually look at my blood and see what viruses i am actually fighting, i really feel i have been dragged down this year and that something is going on with my immune system that is very different from the last few years. I was watching a video on YouTube of a talk by Dr Martin Lerner about viral issues in ME/CFS and antiviral treatments that can help people with certain viruses (herpes related) in their systems. (There are 3 linked videos). I hope his research is pursued and we can get tested and to try this kind of thing soon, as the XMRV discovery only adds to this theory of viral factors keeping us ill. It just feels like more could be being done and progress on these ideas and research discoveries is so slow. Life is ticking away here!

Ooh is that my £10 christmas bonus from the DWP i see in my bank account today? Thanks DWP!

hmm what shall i spend it on this year… a big bag of chestnuts maybe… how seasonal and sensibly nutritious i am!

(see how i am trying out the mini blog posts? not sure i can keep it up as it’s not in my nature to keep it brief!)

I have started taking two new vitamins.

(I am no expert on these matters and am just trying to work out what is best to take with the information i can gather, at my own risk, so please do your own research/consult your doctor rather than copying what i am doing!)

I have got some sublingual B12 powder (you put under the tongue) which is meant to be better absorbed than tablets. My multivitamin has some B12 in it already but i am sure i would be deficient if i did not take it as my diet does not include any natural sources as far as i can tell (mushrooms and cheese have a bit?). I know of various pwME who take it and some who get regular injections of it which is meant to be even better than taking it orally. I think there have been studies that it can help with some symptoms of ME but i have not the energy to look that up right now, sorry for shabby posting without proper research evidence! Energy is low at the moment so if anyone has any handy info/links on this to hand, please do comment below!

I am also taking Vitamin D (in the form of D3). This is a bit more risky as it is a fat soluble vitamin. In theory you could take too much as the body may not get rid of any excess – it cannot just be processed and passed out in urine like, for example, any vitamin C that is not absorbed. I am only taking the RDA and seeing as i generally do not go outside or rarely even see the day through the window these days, i think that should be ok. (I read if you are getting vitamin D through sun exposure the body knows when it has made/stored enough so you don’t overdose, just in case you were worried!). There seems to be growing evidence that many of us are vitamin D deficient (i mean the population in general, not just pwME; particularly in northern climates where sun exposure is limited and people are very sun-cautious/covered up even when they are out in it) and that it can play a role in many illnesses (MS, cancers…). My osteopath said that he thought i should consider it and that a doctor friend of his had talked to him about it and suggested that the risk of cancer through sun exposure (not burning, just being exposed little and often) was much less than through vitamin D deficiency and that people needed to change their focus and attitudes to the sun. He also said that there seemed to be emerging evidence of deficiency having a role in many illnesses.

here is one article about it:

here is a long factsheet that is a bit scientifically written but that highlights some useful things: It mentions bone health for people who are inactive, the likely need for supplementation in people who are housebound and who are vegetarian (er, me on all 3 counts!), issues of toxicity and other possible health benefits and illnesses that can be affected by a lack of vitamin D. My grandmother has had osteoporosis since she was relatively young so i am also aware it may be something i am prone to, though i do not know if it runs strongly in families or not. Apparently when you don’t jump up and down much or walk strongly about, that lack of impact on the bones can lead to them being thinner. That jarring action leads them to build themselves up and be stronger for that kind of action in the future. As i creep/shuffle about gently in general i think i am not getting that impact.

I will take it all winter and maybe not so much in the summer if i can sit outside more regularly as i tried to do this year. I read somewhere (sorry, again i know not where – must try to be more organised!) that just ten – twenty minutes sitting outside in gentle sunshine with some skin exposed (face and arms or legs) is enough for your daily dose, which sounds easy, but in this country (the UK) the days when this is possible even during summer not as frequent as you would think. I tried to seize the moment as much as possible this summer and did grab some rays even when the day was generally cloudy due to my flexibility of being at home all day, but still did not manage more than one in three days during the height of summer. For people who work it is even harder i should think! Also if you have darker skin the production of vitamin D is slower than for paler skins, so dark-skinned people living in the northern hemisphere are even more likely to be deficient.

Obviously the best thing regarding all supplements would be to have thorough blood tests done to see which ones i really am deficient in, but as this seems to be unavailable on the NHS for most vitamins/minerals, we are left guessing. As my diet has been more restricted this year and my digestion has also not been functioning well before this due to very bad IBS symptoms i think i do need to take supplements. If i have no major deficiencies it is one less thing preventing my body from working as well as it could…

Many apologies for bad blogging – for not backing up my assertions with lots of links to research – i just wanted to get some blogging done but am not up to being on the computer long enough to do a proper job…

I just remembered/realised i can make the snow change direction and speed with my mouse  🙂

Wish it would snow in the real world but this is fun for now!!

yes, dangerous territory here, but lately i have been thinking of things that i would like to do and places i would like to go.

This is not “a list of things i will do when i am well” it is just a list of things i want to do (both seem pointless really). The fact that i would need to be much more well to do them is besides the point, i can’t help what i want and what i (would)enjoy, however out of reach they all seem to be.

A few things have set me thinking recently, partly hearing what my (healthy) friends are doing over xmas and new year and realising (again) how far away from being able to do these things i am; and partly thinking about my birthday which is a few weeks after xmas and what we could do to celebrate has made me a) think about what things are possible and b) what things i would really like to be doing. There was the suggestion of going away somewhere nearby for a long weekend  as we often have gone somewhere at this time of year and i looked at options but soon realised that either they were beyond me and likely to be depressingly hard to cope with and therefore not much fun or such a compromise that it would just remind me of how limited my options are. So we are back to playing it by ear and perhaps going out for an afternoon if i feel able to try something. I am researching possibilities for different levels of adventure/ability.

Anyway, back to the list, in no particular order and i am sure missing lots of things out!

  • Go to Cornwall
  • Go to Moray Firth to try to see the dolphins (second time lucky?)
  • Go to Plockton & Skye again
  • Visit Friends in Barcelona, Australia, Wales, elsewhere in England (more than one!) – yes i am inviting myself…
  • Go to Kew Gardens, Natural History Museum, Victoria and Albert Museum, Chelsea Physic Garden, and many other places in London i have yet to discover I am sure
  • Go up in a hot air balloon
  • Study something creative, preferably a mixed course of arts/crafts/photography/design/writing etc
  • Study horticulture at Kew? Not sure if i really want to go the whole hog on this but how cool would it be?
  • Go up into a tree top with ropes and harness
  • Go somewhere wild and beautiful and be able to walk around all day taking pictures/drawing and soaking it all in
  • Be able to work on something (artistic project) all day/week and become totally absorbed in it, lose myself and also to produce something that means something to me
  • Have a party and have lots of people who would come and have a laugh and have interesting conversations all night
  • Do some things as a couple: meals out, holidays, days out, cinema, pubs, live music, anything fun really that isn’t sitting watching tv
  • DIY and household jobs – oh, just to get stuck in!
  • and many more that my brain can’t even contemplate right now…

I have avoided posts like this before, though i have read ones that others have written. I suppose i am feeling low and just wondering when i will be able to accept this properly. Will i always struggle emotionally and feel i am missing out on “the life i could have had”? I am not sure it even IS that any more, maybe i am just wanting more that i am getting, and that seems wrong: I should be focussing on the good things i do have and it annoys me when i can’t just do that. It all seems such old territory but it still comes over me in waves, even if i am not grieving so keenly for my healthy self as i have in the past. I think the last few months have been perhaps harder than i expected and that has taken its toll. I find myself questioning if it IS this bad or am i somehow being a drama queen? There is also a sense of unreality and distancing myself from how bad things are, which i probably a protective mechanism but i feel concerned for my mental health when everyday experiences become surreal.

As my mum says: “sometimes i think i think too much!”.

(This is one of many posts about my IBS, to read others, just click on the “IBS” link in the tag cloud on the left…)

A friend gave me some probiotics a few weeks ago called Align. She went to great expense buying it from the US as it has been said to be good for people with ME/CFS. She tried them and they sadly did not agree with her so very kindly passed them on to me to try. I have taken them all, i think it was for 5 weeks. They did not upset me at all or make any difference that i could see with my IBS, which has been pretty stable as long as i stick to my safe foods. I did not take my kefir for most of the time and this change also had little noticeable effect. I did start taking Kefir for the last week or so when i was ill with a virus that made me sick and have an upset stomach as i thought the more good bacteria the better in that situation!

I do think that taking kefir/probiotics is a good thing for me and i will continue to do it, as i hear such good things about them for the immune system, detoxing (the neurotoxic metabolite test which came up positive for me is based on theories of leaky gut type problems in pwME and probiotics are supposed to help, though i have not heard any follow up to the test in terms of published research/treatment advice), and of course IBS symptoms. I just wish i could see evidence for myself!

My IBS has settled down overall, but this is only because i no longer eat gluten, not much dairy, not much resistant starch or very fibrous foods, little fruit and raw salads, etc etc. I am unsure how much help the probiotics have been, though my flare ups are less dramatic now than at the peak of my problems and when i first started the dietary changes so maybe they have helped a bit.

I have been a little skeptical of the resistant starch idea, which my POTS specialist told me about (she also deals with ME patient issues in general) but it really does seem to be the case for me that i cannot digest them well (i explained all about resistant starches here). I can now eat white rice that has been reheated (i have not tried cold foods that have been cooked as this is meant to be worse than when they are warmed up again) but potato seems to be terrible (it is meant to be worse than rice). A few chips from a pub can cause trouble (mainly a lot of discomfort and wind) as they are partly cooked, cooled then reheated/cooked again later. Added to this potato problem is “modified starch” and “potato starch” which are in a LOT of foods and seemingly all gluten free bread/cake/biscuit alternatives. I tested out some gluten free bread recently as the potato flour/starch was quite far down the list and there was no maize flour in it (has the same effect) just to try to widen my diet and it caused all sorts of torture and a couple of nights of quite bad pain through my whole stomach and lower back. I had forgotten how painful my stomach used to be on a regular basis! Potatoes when freshly cooked are no problem at all and are a regular part of my diet but the starches and their digestibility apparently change during the cooling process and when reheated not all of them change back, so to speak.

Other things that are high in resistant starches apparently are beans, like kidney beans etc. I am a vegetarian and I really miss beans. I want some baked beans, preferably on toast, but with mashed potato and a bit of grated cheese would do… but after this week’s experiment i am feeling a bit more cautious. (I have reacted badly to peas and chick peas, though in very small amounts hot chick peas are usually ok. I have not tried other beans/pulses). The other night i felt really sick and my bowel was cramping badly after i had some of the bread with marmite (which was so nice but not worth feeling that bad). I was unsure if it was all a reaction to the bread (and the chips i had the evening before – yes i have been throwing caution to the wind – literally) or if it was also that my system is still not too strong after being so sick ten days ago. I am not usually queasy even when my IBS is bad and am rarely sick, nevertheless it was a definite reaction and it was the second time i ate it, bad reaction both times.

I really want to try to eat gluten and wheat products again as not eating them is so inconvenient more than anything else. I do crave and miss certain things, but mostly i just want to be able to eat out at the pub or a restaurant occasionally, or buy a sandwich… When you rarely go out and there is not much i can go out to “do”, sitting in a quiet place for some food for a short while is one thing that in theory i can do sometimes and something i can do with my partner for a treat but it has become nearly impossible for reasons other than energy and that is even more annoying! I am not sure when i will be able to test out eating gluten properly. I need to be feeling better than this as one reaction to it i have noticed but not tested consistently is that i feel more like a zombie after eating wheat. Hard to test that when i feel so bad all the time anyway. I think i do feel generally better for cutting out the stodgy wheaty foods, many of which (pastry, solid white bread things like pizza base) have long disagreed with me, but it would be nice to have the option sometimes!

I did have a theory that after a few weeks/months of calmer digestion that my system would heal and i would be able to reintroduce more variety of foods and all would largely be well, but after over 8 months (? i have not counted exactly) i do not feel much further along with that process. I have discovered i can eat certain vegetables with no obvious problems, i can reheat white rice, i can handle some spicy foods too, and nuts and seeds though raw and fibrous seem largely ok. I also can eat brown rice based pasta which is nice. All this is great but still quite limited! I need to test out some more but whenever i do it seems to cause a flare up and it never seems like a good time for that when i am struggling with so many other symptoms and am generally so low in energy.

It has taken me a long time to see patterns and believe in cause and effect of eating certain things, like the potato problem, as it is such a complicated issue. Often i eat those risky things when out of the house, then i am unsure if it is the potato (for example) causing the problem or if the exertion of going out has meant that my body did not have the energy/blood flow to digest properly and if i had eaten the same thing quietly at home it might have been ok… see what i mean?

Anyway, i am grateful i can keep it relatively under control day to day even if that means missing out on a lot of food fun and freedom!

ME/CFS Awareness

ME/CFS Awareness


December 2009