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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!!!!
This morning i went to the doctors – it was a bit early for me – my taxi came at half past nine. My stomach was a bit upset and i felt a bit weak before i set off, but was ok. When i got there i sat down while the queue for reception went down, then got up and told them i was there and sat down over by the wall (the chairs are really unsupportive and the ones against the wall are best as you can rest your head against the wall, but it does involve leaning quite far back, which is not good for POTS or my back, but better than supporting myself). Very quickly i felt faint and my heart was beating really fast and i was over heating, so luckily no-one was sitting near me so i lay down across the seats. after a while this helped and my heart calmed down a bit. i sat up after about ten minutes as i thought if my turn comes it will take too long to go from lying to standing as i will be very dizzy so i thought i would get used to sitting in the meantime…
Sitting up was hard and i had to haul myself up, and then got even hotter. A lady across the waiting room told the nurse i was in distress and she came and sat with me (was amazed at the heat radiating from me!) and gave me two glasses of cold water and that helped. I thought it probably looked like i was having a panic attack so i explained that i have ME and POTS (and briefly what that was). She was very nice. She then had to help me along the corridor to the doctor’s room. The doctor helped me back along and rang my taxi home and the taxi driver was really nice to me.
I feel a bit better now, but still very weak/lightheaded and my lower legs are very heavy/achey.
I cannot wiat for my appointment with the POTS specialist on wednesday as this is just demonstrating how much this affects my life. The last three times i have been to the doctors this has happened, i have had to ask for water, have felt dizzy and have really wanted to lie down (but this time i had no choice, last time i got to lie down anyway a bit as was having blood test). I think maybe the time of day must affect this as i have been other places and not had such a bad effect although i do feel symptoms most of the time… It has happened when out with the dog, where i have had to sit/lie down outside, but i am not able to walk her really at all now so that avoids that situation… i really hope they can give me something to manage this as i feel it is responsible for much of the worsening of my condition over the last year or two…
Well, i received my tribunal papers a few weeks ago, and today i have sent in my remaining evidence to the Tribunals Service. I have sent a letter from my GP and also a letter from the CFS/ME specialist, who i saw a couple of weeks ago.
The tribunal itself won’t be until the new year as they have a bit of a back log at the moment, so in one way it is nice not to have to think about it and to have plenty of time to get the evidence in etc. but at the same time i would just like it to be done with, whatever the outcome. This process began last Easter-time and it is now nearly Chistmas! I should be happy to think of all the back payment i will get, but as i doubt that i fit the narrow criteria, particularly for higher rate mobility, i don’t think i will be awarded that, however difficult my mobility problems are.
So anyway, the letters i have sent are the only really supportive evidence that i have, so let’s hope that they are detailed enough… both are quite brief so i will summarise the points made below:
I am writing in support of this patient’s appeal…
Her diagnosis is clearly CFS (ME) and there has been a steady deterioration in her symptoms since i last saw her with increasing headaches, neck pain, fatigue and marked reduction in her physical exercise capacity.
She has considerable problems on standing… and has been diagnosed with Positional Orthostatic Tachycardia Syndrome… gives very marked postural symptoms. This is part of autonomic dysfunction, which underlies CFS.
She is not able to undertake activities of daily living without significant help from her partner. Her physical activity is limited to 5-10 minutes maximum. She has become more significantly depressed because of her disability.
…her disability is severe and progressive and has not shown any significant improvement with previous therapeutic input along the lines suggested by the NICE guidelines…
After the letter he wrote for the insurance company i was a bit disappointed with this one as it was less detailed and specific about what i can and can’t do, and this one for DLA seems more important to me, but it is quite strongly worded so it may be ok.
The letter from my GP is not great, but it is better than the very briefly and incorrectly filled form she initially did. I had to go back and tell her is was not good enough – a bit nerve-wracking!
So now her new letter says i cannot cook a meal for myself, cannot walk more than 150m* without discomfort/rest, that my condition is severe and that i have a certain amount of energy to work with each day so any help that i get makes a big difference in my ability to manage my energy and condition.
*this was the distance used in my rejection letter as the reason i did not qualify for higher rate mobility, but it seems the actual distance they use to judge can be 30m, 50m or who knows what next week, so her saying this may work against me, as i cannot always leave the house to walk anywhere at all…
We will see how these letters affect my appeal, i hope they are detailed/strong enough and help to avoid me having to talk for ages at the appeal about the nitty gritty of what i can and can’t do as it is very difficult to be consistent when there are no definite answers with such a condition as this, and also to concentrate and talk for any length of time, especially under stress.
I will not be having any representation either… but hopefully a benefits adviser will be coming to help me prepare for it once i get the date through, which may help me feel better about it and know what to expect.
Anyway i am trying not to think about it right now and leave it til the new year when it will actually happen… i don’t think there is anything more i can do, just need to see how it goes on the day…
Recently i went to see my NHS specialist and the insurance company wrote to him for a copy of his report (they like to see everything related to my health). He has written them a great letter and i thought i would share my joy by copying the important parts below:
Her condition has deteriorated significantly…her physical activity is reduced to 5-10 minutes without needing to rest… She is dependant for her ADLs (Activities of Daily Living) on assistance from her partner. Her memory and concentration is poor. She needs to sleep during the day.
She is not fit for work of any kind at present and is unlikely to be fit for work in the next six months, as a minimum.
Since she last had involvement with our team her condition has deteriorated. This is in part because you company required her to attend CBT with a therapist who has no knowledge of the management of CFS/ME – this has contributed substantially to her decline and was an entirely inappropriate intervention which should have been discussed with me first, as her treating clinician.
Her depression is secondary to her underlying physical condition. There are no secondary psychological conditions preventing her recovery.
I would note that from the tone of your letter and from the approach you have taken to my patient that you view her illness as entirely a psychological one. This is entirely unacceptable and demonstrates an inadequate knowledge of the current theories of the aetiology of chronic fatigue syndrome. CFS(ME) is classified as a neurological disease under ICD-10 and as a physical disabling condition in the NICE guidelines of 2007. Current research has shown that there is a genetic susceptibility to develop the illness, which in about 50% of cases can be triggered by infection, as in (my) case. We believe that infection leads to a dysregulation of the immune system, probably involving the IL-6 – IL6R system, which in turn leads to generalised autonomic dysfunction, the degree of which can be correlated directly to the level of fatigue. The muscle pain in CFS(ME) has been shown to be due to lactic acid accumulation in the muscles secondary to abnormal muscle blood flow. Functional brain imaging and neuroendocrine testing has shown that depression and CFS(ME) are completely distinct. I trust that henceforth you will treat her condition from the appropriate medical perspective.
It is so good to have this statement of support from the specialist. Hopefully it will keep the insurance company off my back for some time, although since i told them how i was not well enough to go to CBT any more they have not contacted me much at all, just sending the annual review documents/forms to fill in. After ringing me every two weeks over a long period before i went to CBT to check how i “felt” about it, and me forcing myself to go twice, despite how totally draining it was to answer an hour of personal questions, and not wanting to go at all, there seem to have been no repercussions to me stopping it. If only i had known that before! I think the insurance company are very fickle…
On a more general note it is so reassuring to read his statement about CFS/ME. Despite having seen him several times before and attending regular group sessions with his team, i was never completely sure of how he felt about the illness and it’s causes etc, which affected my experience in those groups. The support they offer is obviously very limited by the NICE guidelines, and i found it of limited use (despite this, the specialist advises me to go again – deep joy), but it is good to know what he thinks. He genuinely seems to care about pwME and our cause and wants to help us. It must be very difficult for him not to be able to do more.
Ok, so this is not health related, but i just wanted to highlight something about the US elections which, for me, takes the shine off a little…
I do not know much about the US elections, the politics, the electoral system etc. These things take concentration and brain energy that i do not have to spare, but this news really caught my eye.
It seems that the (slightly) more liberal voters who voted in Obama, may also have been voting for anti-gay amendments at the same time, how nice.
People are celebrating racial equality and how far things have come, but i feel things do not change overnight and news people really do talk some rubbish. On TV they are saying that America has moved on from it’s history of slavery and racial oppression i feel it is way to early to say that, never mind chanting “freedom! freedom!” If America had already moved on, then why would it mean so much to them to have the first african-american president? How about a non-white, non-christian president? How about a native-american president? How about an openly gay or lesbian president?
I am pleased to see that people are striving towards freedom, don’t get me wrong, i am pleased to see such passion for equality, but it needs to be for all.
I am not feeling very articulate today but wanted to post this now rather than when the hype has blown over!
(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…