Another Quarterly Hospital Trip

I went to the hospital today to see the POTS specialist again. I had a good time! I was a bit worried about how i would feel, and considered ringing them in advance asking them to wheel me from the entrance to the ward, as i had to go alone and it was an early appointment again, but decided i would be ok. They have moved and last time when we went to the new location for the first time i felt very disorientated. This time i had to use a different entrance and it was actually better, though a bit of a walk. I have improved a bit the last couple of days so felt ok to walk a bit.

I was impressed with the hospital entrance which had a shop, cafe, starbucks, hairdresser etc and was really pleasant. I thought i would have an easier life if i lived there as everything was so close together and convenient! I went into the shop on the way out just because i could (i miss shops, not that it had anything i wanted really).

Anyway, so the apppointment: I saw her early as the person before me did not turn up (a “DNA” – i had not heard the term for ages and it took me a few seconds to realise she meant they had not rung to cancel: “Did Not Attend”. I like the term – good for medical appointments!), so she had extra time to spend with me which was good as i had a few things i wanted to talk about.

I told her that apart from the first few weeks this three month period since i saw her last have been pretty hard, probably due to the virus i had which i have not really got over… at least i have not regained the levels of energy or strength i had before that. She asked about my typical day again to identify any peaks and troughs in function to adjust my dosage to help me through the low points. She suggested taking a higher dose first thing, staying the same at lunchtime and re-introducing the late afternoon dose which i am pleased about as i seem to have a big slump late afternoon. So that was the POTS stuff done really, she commiserated me on the virus situation as the same thing happened in the period before i last saw her. Hopefully i can avoid catching any more and maybe experience more of the glimpses of feeling stronger that i have had between these long running lows. There HAVE been times where i have managed to do more, feel better in myself and bounce back quicker, but is it hard to remember them after so many weeks that feel like regression almost to the old days before i even got POTS treatment.

I also wanted to talk to her about my pain and discomfort issues. The last few weeks my muscular pain and tension have been particularly bad. I have had to lie flat on my back a lot more (which i forgot to say) just to rest my upper back as i am having trouble sitting comfortably, even in my one comfy and supportive chair in the house. My skin has been very tender and painful to touch, particularly in areas where my muscles are rock hard underneath. I have been having regular massages which have helped a little bit, but only in a very temporary way. I have also made a bit effort to stretch the worst areas every day, which feels good immediately afterwards and i am sure had helped, but again not dramatically. 

I have also had an increase in skin itching and sensitivity, which may or may not be related to the increase in other pain, as well as more pain/discomfort from my already sensitive bladder, meaning that i feel a continuous feeling of needing a wee, especially in bed when lying on my side or when there is any clothing pressing on my stomach. The itching is also worst in bed and we now only have one sheet i can sleep on that does not cause itching, despite the others feeling quite smooth to the casual touch. She thinks the itching is probably just another symptom of my automonic nervous system not working right. She has previously given me a blood test to investigate the itching so there was nothing else to do really.

She gave me a CK blood test to see if there is anything going on with my muscles. While i do not want this to come back positive (after a quick internet search!), I am so impressed that she takes everything seriously and does not just dismiss it as a typical ME symptom and adopt the ”what do i want her to do about it” attitude of most other doctors i have known. I am reassured that if there is something she can check out she will. As usual the taking of the blood was painful, as when a needle is inserted into my veins typically nothing comes out, and today was no different. I warned the nurse before we started and she said today we might be lucky, i said i doubted it. It is like my blood is just sitting there and not going around my body with any force at all, which explains a lot. So it needed to be wiggled and a very sharp pain shot up and down my arm and persisted long after the blood was taken. Ouch! I am used to that though and am not really bothered, though it did make me a bit flushed in the cheeks and lightheaded. She also tested my urine to see if i have any infection but that was negative.

She said there is colleague who does work on muscles that i could see but i can’t remember if that was if the test comes back positive or negative - i am not sure what he can do for me – we moved on quickly to talk about other research she is doing on muscle function and ME and she asked me if i would take part (yes). It involves a muscle biopsy but she says it is pretty much like having blood taken, and seeing as that is usually painful for me i think i will cope with it. Not sure when that will happen. She seemed surprised i am so keen to take part. I am just enthusiastic to do anything i can to help with much needed research and it is good to feel i am doing something worthwhile with what limited energies i have. It is something i CAN do. Plus i like going there, it may seem sad but it often feels like a social occasion. I have known them for over a year and seen them as often as any real life friends this year! They are friendly and take time to chat. It is nice to have some social contact and be out and about.

I have made an appointment with an osteopath for Tuesday as i really need to try something new with my upper back problems in particular, although they don’t just treat backs. I am hoping to also get advice about stretching my problem areas, even strengthening them perhaps, or am i getting carried away here? Also i wonder if my pillow is the right one for me (i am constantly fighting with it to get it fluffed up to the right depth) and if he can advise me on sleeping arrangements, seeing as i spend so much time in bed. It may be making my shoulders more painful if lying on my side is putting too much pressure on them, and it has been too painful to lie on my side much lately, but i do prefer it so maybe a higher pillow (tempur?) would be helpful, but i don’t want to spend a fortune on a fancy pillow then it be no help.

My partner is away for the next few days (though she seems to be coming down with something this evening so we will see what the morning brings - virus alert!). It is the last planned trip she has this year except one overnight trip which should be ok. I am really pleased about that as i don’t think these periods of self-care have been kind to me when i am already struggling. The compound effect of several days alone can really have a big impact on me and take some getting over. Apart from the Osteopath appointment i have nothing much happening while she is away, and i am feeling ok about it now that my pain levels are gradually improving. Maybe in a few weeks i can actually have some spare energy to do some of the creative things i have on my list, as recently i have been just doing the bare minimum in daily tasks and i am getting a bit frustrated. Where is the fun? Where is the creative sparkle that makes life worth living? I have been limited even in computer time, tv time and reading abilities… this blog post may be a sign things are improving! Woman can not live on stretching and resting alone.

Massages, Itching and Pain

On Thursday i had a full body massage and (possibly) learnt more about my body than i expected! Certainly i am asking more questions!

It was much needed as I had had a bad headache for 3-4 days and even when that improved i was left with so much tension in my head, neck and shoulders that it was still painful to touch many areas. I often/always have these tender points, in my upper back, shoulders, jaw, scalp etc. They are little knots of pain and i am unsure what i can do to ease them. Anything which helps seems very temporary and they always return to their previous level of tenderness within a short time. These symptoms were at their worst before i started to take Midodrine, which did seem to ease the almost nightly headaches (as more blood was flowing to my upper torso and head – which is kind of useful to have!), but every now and again they do resurface and there is always that underlying muscle pain and tension. I am wondering if the higher dose of Midodrine i am on is causing this clenching up of my muscles, (i did have worse upper back pain the last time i tried to up the dose) but of course it could be a myriad of other causes…

So that was my motivation for going, as well as the fact that i have a busy weekend away coming up (my sister’s wedding!) the prospect of which is causing me some anxiety, as travel and social situations always do, due to how difficult they can be to take part in and the impact they can have on my health for weeks afterwards – there have been moments where i have doubted i am well enough to go at all, but i am feeling more positive now, and looking forward to actually attending a family event for once!

I have not been for a massage for a long time and it was so good. As always when i go, i realise how much it was needed, discover areas of pain and tension i was not immediately aware of, and think how much it would help me to have a massage much more regularly. I do not know if that would create any long term improvement, or prevent my muscles getting into such a state or if the relief is just temporary… I think it would take a lot of massages and more than i can afford anyway!

When the massage started she did my face and front of shoulders and upper arms, and immediately on touching my upper arms, said there were a row of knots down the front (it was very sore there with even a light touch, which i have been aware of for months). She asked me if i do weight training! Apparently they are “Weight-Lifters Knots”!! I did laugh at that. I explained to her that i struggle to lift even small things, like the kettle, and that my muscles do not behave like normal muscles, as they quickly lose power and energy and over-react with pain and tension for a long time if “over worked”…. She was very surprised and said that she would have thought i was a weight lifter if i had not told her… She asked again to clarify: “so you couldn’t go to the gym and lift a few weights?” “Er, no, really, most days i cannot get as far as the corner shop, i rarely leave the house… i could not get to the gym, never mind do anything when i got there” or words to that effect… As keen as i am to educate people about ME and spread awareness it is quite a pain to have to use time when i am supposed to be relaxing (and I am paying) to explain this stuff but i answered a few more questions (no, i don’t just fall asleep all the time, i am not just tired, i am ill… etc etc blah blah blah).

Anyway, it is reassuring that my muscles appear normal in size etc after 3 years of pretty severe ME and ten years in total of being unable to do any kind of “exercise” as the term is generally understood, though i was more active for several years than i am able to be now. It is something which has baffled doctors and led to people being disbelieved and denied benefits (still are, if you read the guidelines for decisionmakers for DLA on ME/CFS which suggest there should be muscle wasting in evidence to qualify as severe… will find link if anyone interested, but can’t be bothered now!)  as doctors would expect more muscle wasting considering the lifestyle we claim to lead. There have been different theories about why it only happens in people who are very severely affected but it is not fully understood how our muscles maintain their tone.

It seems that my muscles are reacting as if they are overworked. In a way they are (yes i am a closet weight-lifter!): As i say, they struggle with everyday tasks like lifting a kettle, moving a chair, lifting a watering can. What is even harder and has a more long term effect is anything repetitive, like rubbing to clean the bath before i get in, chopping something, rubbing my scalp when washing my hair, and i generally avoid this kind of activity when i can as it leads to muscle pain, long term aches and cramping, as well as adding to a feeling of general weakness and exhaustion afterwards. Some days are better than others, depending on my general state and if i am already in recovery from something or struggling in general.

So far, so much i already knew. What i found intriguing was that, as well as my upper arms, my lower legs at the sides (from ankle bone up, on outsides of legs) were also incredibly sore to the touch and knotty under the skin. I have been having really sensitive skin in these areas (upper arms and legs) as well as itching. My legs in that area are so sensitive that if something touches them unexpectedly (like in bed) it is like a bolt of electricity running through my whole body. I have a real problem of certain areas of skin being so easily irritated and therefore often itchy that it affects my sleep as well as what clothes i can wear. I have to “sweep” out the bed before i get in to get rid of any tiny bits of dirt or dead skin or whatever that has been carried in from the floor, as any of this stuff (which i call “Gravel” as it is so sharp to me, though tiny) can cause a major episode of itching.  I find if there is dead skin on those areas it triggers itching and if i moisturise after a bath and the dead skin rubs off (gross i know, but it does) the itching stops, despite me having rubbed it, which is usually something i avoid as it can trigger the itching. I was starting to think that my nerves were over sensitive and that i had a problem with my skin and pain, though i had no idea what to do about it. This may be partly true but the massage therapist seemed to think that the knots and tension in those areas may be partly causing this extreme discomfort i am having in the skin of these areas. I suppose it makes sense as that underlying tension must affect the skin and could make it more tender and sensitive in the whole area surrounding the problem.

I have heard varoius people asking about skin itching and if it is a symptom of ME. There was a letter in a recent ME Association magazine, and one on a message board i saw recently too. They caught my eye as i have had these problems for a long time. The consensus seems to be that, no, itchiness is not a symptom, but it seems to me in bodies that are riddled with problems that there can be knock-on implications causing almost anything!! (what a cheery thought). My sister has ME and also has problems with itching and sensitive skin.

I have another problem of itching which may or may not be related where if i have a shower my lower legs in particular always react very severely and start to itch. It can last for several hours and all i can do is sit in bed and stroke the skin gently which seems to confuse the nerve signals a little. It can be so painful that i am in tears and is obviously exhausting and distressing. It is like nerve pain, i think the word itching does not do it justice! I never shower now, and the rare occasion that i have (when no bath available) it still happens.

It also sometimes happens after a bath, particularly if the water is not hot enough. I think there is something to do with temperature, as it seems to happen when i get out of the bath and the cold air hits my legs. It first happened when i was 13 years old, so i wonder if there is a hormonal influence. The stimulation of the shower may trigger the itching sometimes, or it could be a problem of being upright, as in the shower and when i get out of the bath. These days i have a very strict ritual around my bath, the temperature, shaving (stubble and hair seem to aggravate the problem so i have to shave every 2-3 days, which is a big comittment when ill), standing for as little time as possible and exposing my legs to as little cool air as possible on energing from the bath. I get straight into bed and moisturise with my tried and tested “safe” moisturiser, then lie there allowing any itching to subside and i cool down slowly and in a controlled manner. I have also noticed it can be worse in Autumn and wonder again if the dead skin as my (usually meagre) tan fades is irritating my skin… so many questions.

Of course i have told a few doctors about this over the years and they have no idea! There is no rash and that is where the discussion ends…

Anyway, i had another massage today (trying for a compound effect) which was great again. I asked her what her advice would be to weight lifters who have “weight-lifter’s knots” and she said that stretching can really help. I already do stretch tense areas, but kind of randomly. When my POTS was at it’s worst i couldn’t even stretch up in a chair without serious dizziness but that is better now… Maybe i should make more effort to do it several times a day and see if it helps… so many things to fit into my day though!

Exercise

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…

POTS – seeing the specialist

Yesterday, i went to see the POTS specialist! It was a positive experience, and although i have realised that i have been pinning a lot of hopes on her and her potential treatments for me, i have not lost that hope since speaking to her. It is the first time anyone has really tried to help me with medication (except painkillers/antidepressants which the majority of people will take at some time), which is the way many illnesses are treated and managed, but to someone with CFS/ME it feels very novel.

She said to me that half of those with POTS experience ME-like symptoms of weakness, fatigue etc and about 27% of people she sees with ME have POTS. I said “oh i am one of the lucky ones to have both” in a sarky way, and she said “well yes in a way you are as it means we can offer your some medication to help manage it.” So if they are not completely distinct entities, it could be said that i have the type of ME that lends itslef to POTS and that there are things that can be tried to improve my quality of life… although my first thought was that she was putting a very positive spin on the fact that as i have both it is a sign that my illness is on the more severe side of the spectrum in the first place! Take your pick! 

I had similar tests to those i had before and again my blood pressure was low and my heart rate was very high on standing – it was 152 beats per minute at one point! They always ask me how i feel when this is happening, and it is quite funny, as i feel ok, just a little lightheaded but it is so normal to me now that i think i have forgotten what it feels like to stand normally. I tell them i feel ok, and they look very doubtful! They only make me stand there for two minutes, i think any longer and i would struggle as i do notice i am swaying more as time goes on and my lower legs tingle and feel heavy.

So they did the tests, and then i spoke to the specialist who is really nice (as is everyone in the unit, it seems). She has given me Midodrine, a Vasoconstrictor, at a low dose to start with. I have taken one yesterday and one this morning and so far, no bad reaction! There are not meant to be many bad side effects, especially on a low dose, but i know i am quite sensitive to drugs so i am always worried about side effects. The ones to look out for are all things i experience anyway, so it may not be obvious unless a big reaction. The doctor says that minor side effects should be temporary anyway. Also it is good as i can still take the painkillers and sleeping tablets that i sometimes take as they don’t affect each other… result!

Although this drug is obviously quite a serious drug, and is recommended long term only if it has a marked improvement for people whose quality of life has been greatly reduced by POTS, i feel that it will be so worth it if it helps me. My quality of life in terms of being able to care for myself and get out and about has been so much reduced over the last three years and has felt like a steady decline, that any turn around in that trend is worth some long term risks. I feel lucky that unlike many chronically ill and disabled people i have not had to pollute my body with drugs just to stay alive, or get through each day, regardless of the side effects and the impact that may have later (and i have a prospect of “later”). Because ME is not (seen as) a terminal illness, at least, most people live with it, even severely, for decades; there is always a feeling that we want to preserve what we have got, health-wise and not jeopardise the future by taking risks now, in case we get that miraculous recovery and because we don’t know how long we will have to endure this if we don’t. But it gets to a point where the implications of living such a limited life are also so “dangerous” on many levels that any drug that can help is welcome. That is how i feel now. Not that this one seems particularly risky but it makes me think of these issues. The prospect of taking a drug every day for the forseeable future is strange for me. I only started taking the contraceptive pill recently and that was enough of a decision, although i am so pleased i am on it now. I realise this is a priviledged position, but it also comes from the fact that there are no drug treatments like this for ME.

It is interesting to compare the way i have been diagnosed and treated for two conditions that are very similar in cause (often viral, but may be other factors) and which affect very similar bodily functions (autonomic nervous system). No psychologist assessments so far for POTS! Just go in, have a test, and take some tablets!

It seems that many of my worst symptoms could be attributed to POTS, so there is great potential for improvement, if we can find a drug which works for me…

Top of my list would be: ability to stand up for more than a few seconds/minutes which is variable and unpredictable, ability to walk for more than a few minutes without making myself feel very ill for hours or being worried if i can make it back to the front door/taxi, not having hot flushes many times a day, not having blurred vision, not having such constant pain and tension in neck and shoulders and also bad headaches practically every day… there are many others but that would be a start and don’t want to ask for the moon on a stick… so no pressure then doc?!?

Interesting what she said about pain, as she said i may have trigger points (this is known as myofascial pain, and is what people with fibromyalgia typically have, and many people with ME have it to some extent as well. I have just bought a book about it, The Trigger Point Therapy Workbook, so i hope to work on my trigger points soon as well, once i have found the energy to find them and understand the book!), but she said that there is a pattern of pain associated with POTS which she called “coathanger pain” which is pain across mid back, shoulders, up the neck into the head… this is my exact pain pattern! She says it is caused by the muscles being starved of oxygen as blood flow in upper body is limited by POTS and the larger muscles show most distress. No wonder my brain hurts!! ha ha.

So my brain is literally hurting now and i am sure there is more to say about POTS but it will have to wait. All i will say to close is that i had no idea how much the themes of my first blog post on Hope and Acceptance would be so much the themes of the whole blog, it seems it always comes back to this for me. Now i have some Hope again (the most i have had since early on in the illness when they were still telling me i could recover and i still half belived them) and it is very dangerous territory… but maybe i am becoming more experienced in coping when hopes are dashed? i “hope” so!!!!

Pain and therapy… update!

(this post follows the last)

So, i had another Spinal Touch session the next week and it still felt weird, although she did some Reiki at the end which made me very warm and was nice. I am not keen on Reiki as i am a bit sceptical about it as well as having had a free session once at a festival which was a nightmare! The woman heard i had ME then decided to tell me exactly why and what i should do about it (yes you guessed it, i just need to do xyz, look at my childhood, communicate more, de-stress, etc etc). So anyway, i let my therapist do a bit of reiki, as she was so keen, and it was relaxing and pleasant enough…

The next week she gave me reflexology and auricular (in the ears) acupuncture, which was really good. Firstly i was fully clothed (always a bonus, especially this time of year) and the acupuncture points we chose were specifically for tension headaches, which included a point for TMJ (jaw joint), muscle release, tri-geminal nerve, forehead, etc etc. i definitely had less severe headaches that week, and only took my painkillers twice. So i had that last week as well and although i am still having tension and pain it is not developing to quite the same level as it was. Next time she is going to do the acupuncture and an Indian head massage to get hands-on with my neck and shoulder muscles. I can’t wait!

The other thing that may be helping is that i am having dog walkers come much more. This week i am only walking the dog once (did it yesterday). Last week was quite busy and i ended up having them come three times and it made such a difference as i was not feeling very good and walking the dog would have pushed me over the edge! It has been making me feel so ill and using all my daily energy for some time now and already i feel a weight has been lifted from me. I will definitely continue to get their help from the next few weeks as it is really good for her (the dog) to get an hour’s walk in daylight hours as my partner leaves and returns home in the dark now, so cannot take her as far as she would in the summer mornings. Also this week with the fireworks going off it has been extra-useful as the dog is too scared to go out after about 3pm, so a good walk before that gives her chance to do all her business and have some fun before the traumas begin… I am so lucky that we can afford to do this. The dog walkers i have found are cheaper than the one we have used a few times before, but it still adds up over the weeks. I am trying to remember that my health is worth it and not to feel bad about the extra expense. (It is cheaper than a mobility scooter which my Mum was told/lectured recently, when she went into a showroom to enquire, should NEVER be used to walk dogs!). I am hoping that doing less walking and having some regular therapy can make some small improvement and make the winter seem less long and depressing than it did last year…

I am also hoping that the POTS speacialist will perhaps give me some treatment which will make standing and walking easier in the future. My appointment is in about three weeks! I know i should not hold my breath…

pain and therapy

So: PAIN! I have middle/upper back pain, and have had for the whole period of my illness (9 and three quarter years) and this is accompanied by tension in my shoulders and neck. More recently this has stepped up a level and i now have very frequent headaches, where my whole head, jaw (TMJ), forehead, neck, shoulders, upper back etc etc are very tight and tense and very painful. I have found some medication that helps but am not keen on just taking it every day. I use a tens machine on my shoulders (you can’t use it on the neck/head), and have a heated wheat-bag around my neck or balanced on my head most of the evening… this has been going on for over two years, but has gradually become worse and more frequent, so that an evening where i do not feel this tension seems like a real special occasion! My back is also very noisy(!) – i wear ear plugs in bed and this means that i can hear internal noises more than external, and when i turn over it is like several castanets going off at random click click clack…

So i have been trying some alternative therapies. When i found out i had POTS recently someone (cusp) commented that cranial osteopathy can help, and i also read that somewhere else, and had had it before years ago when i first got ill, so knew what to expect, so i managed to track down a place nearby that offered it and rang them. I was told that the first session would cost £75, and that further sessions would be £42. I could get 20% off the first session by signing up to their emails, so that makes the first session £60. I hung up and had a think… it is more money that i have ever spent on a therapy, but it’s the only place that does it nearby, if it works it is worth it, and after the first session it is more affordable, even if not cheap. I have only really had one alternative therapy before (apart from massage, which is always nice) which i can say was definitely worth it and produces real benefits/results and that was acupuncture. I can no longer get to see that person as i had to drive there, which i became unable to do with any certainty, and would feel unsafe on the way home in particular. (I have not found anyone who will come to my home). I have never regretted spending that money, and i thought that considering how bad things are, it may be worth giving this a try. So i rang back and booked in.

I went there on the bus, as it was only ten minutes away, both bus stops have seats of a kind, and a taxi (the preferred option) would have added to the cost. When i got there i was faced with a very large flight of stairs. This place is primarily a physiotherapy centre and the more i think about it the more incensed i am about their lack of accessibility. “Got an injury? hobble up these stairs for therapy!” hmm, nice attitude. The staircase is very fancy (solid wood) and very wide, so there is ample space for a Stannah Stairlift, or escalator, if not a proper lift… the amount they charge (and the fact that they are a company at more than one location, not a tiny business) it is shameful. So i dragged myself up the stairs and approached the desk (again very sleek with no chairs anywhere nearby to rest on) where the receptionist (who herself has ME and should be “standing up” for these things ha ha) dealt with me and eventually showed me a chair.

The therapist was very nice and seemed very knowledgeable about ME and made some good observations of my physical state. The therapy also felt good, like a gentle stretching dance, lying down. My back and head were much more painful the next two days but i saw this as a good sign. As i left however i learnt that the next session, an hour, would cost me £75! From the description the receptionist had given it has seemed as if the other sessions would be £42 for an hour, but apparently that is if they are half an hour. It makes sense when you think about it, but i am not always quick on the uptake these days, and cannot believe how much it costs! Also she can only do Tuesdays, which is not very convenient, as unless i want to walk the dog and go out on the same day (which i try to avoid, for pacing reasons) i have to find a day that my partner is going to be home to do the dog. Also, i expressed concern that they have a “pay if you cancel within 48 hours” policy, and my therapist said to tell reception if i need to cancel that i should not have to pay, but that if i don’t say i will be charged as it is an automated system in another office. I don’t want to be in a situation where i feel i have to push myself to go when not well, and therefore not benefit from it anyway, or end up paying for nothing… Suddenly it is all getting complicated!

So since then, (as the next appointment she had was for three weeks later) i have been researching alternatives… Yesterday i had a woman come to the house (people who do that are very few and far between i have found) who offers Spinal Touch, Reflexology, Indian Head Massage, other massage etc etc. I had Spinal Touch, as the description sounded similar to cranial osteopathy. This woman charges £25 per hour – hurray! She actually stayed for nearly an hour and a half yesterday as was explaining all about what she would do before she did it. It  was “interesting”!! It was not very relaxing, even after the initial explaining everything in minute detail which i found quite draining to concentrate on. I had to stand next to a plum line and was drawn on with a felt pen, then i lay face down and she worked on my back, but not in a massage way, literally just “touching” and a bit of rubbing on certain points with one hand, while the other hand was basically a thumb pushed into one buttock crease (on the inside – bordering on very intimate!) as like an earth wire. The energy from my dodgy vertebrae is supposed to to go up her arm across her shoulders and down the other arm back into my “meridian” (or bum as it is also known). Also i had to give constant feedback about each vertebrae and how it felt, when it felt better etc, so not even very relaxed, which to me is a large part of the benefit of alternative therapies, that deep relaxation. On the other hand, maybe my back and shoulders feel a bit better today. I am trying to see how they are over the next couple of days before making a judgement, but it was a bit too weird for me, the more so when i look back on it! It is based on ideas of acupressure and chinese medicine (flows of energy etc) as well as other things, and after my good acupuncture experience i am trying to have an open mind (but not being very successful). If anything it has just confused me more. I am thinking i will give it another go next week and then maybe get an indian head massage or back massage (she may combine – seems quite flexible) and see if my head tensions ease at all with a bit of attention.

So there we are. Cheap and convenient, or expensive, inconvenient and possible more effective; but who knows?

The third option which i may try anyway is Amitriptyline, which the ME/CFS specialist suggested may help me when i saw him on Thursday. It annoys me that there is never any discussion of what is causing all my muscles to tighten a vice-like grip around my upper body day after day, or what i could do to ease them naturally (exercises, stretches, better posture…) but i should know better than to hope to get anything more than the “tablets for symptoms” approach on the NHS. I can see why so many people turn to alternative therapy, i am just wondering (as i don’t know what is causing my problems) if they can ever do anything more than give a very temporary relief, as the underlying causes are still there, just as they are with the pharmacological “solutions”.

Ho hum, these things are meant to be relaxing not create more stress! Decisions are not my strong point these days…

p.s I am going to cancel the next cranial osteopathy appointment (NOW!) and complain about their stairs again… i feel i shouldn’t go back just on principle it’s just not good enough!

D-Ribose and other things i take… update!

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!?

Hot Stones Massage

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!