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As I may have mentioned before, I got an Alpha Stim machine a couple of months ago. It has two functions: Pain relief and also another setting called Cranial Electrotherapy Stimulator (CES) which helps the brain go into an alpha state – relaxed yet alert!

The pain relief part is done with electrodes like a TENS machine or with probes (pen-like shape). The current is much more gentle than a TENS machine. The probes work faster than the electrodes but are harder to use on yourself in hard-to-reach places!

The CES setting is done via ear clips on the ear lobes.

I have been using it on both settings just about every day since i bought it. The results have been positive, especially the CES setting. I did not think this part was the part that would benefit me the most, as I have a lot of pain issues and the CES setting is generally used for low mood and anxiety. It also helps with sleep. I have found that I am sleeping better, and that it often just makes me feel better in myself when I am having a low point in the day.

The pain part is more complicated for me. In the information it says that some people have a delayed reaction to the effects of the Alpha Stim on their pain. This applies to people who find that they have a delayed effect with anaesthetics and, lucky me, I do. This means that I may not feel any change immediately, but may feel much better the next day. This does complicate things when trying to measure the effects of the machine, and also it is hard to know how much to do and whether to do it on the days when the previous day’s session has had a good effect, i.e. the pain is not really bad at all (but i know it will return)! For most people though, the effects are felt right away and so they know when to stop, and indeed, start.

I have found that I have immediate benefit from the Alpha Stim with pain in my jaw and face and well as it getting rid of headaches sometimes. I have been having trigeminal neuralgia recently and it has been less effective with this type of head pain. I have been using it the most on my chronic upper back, shoulder and neck pain. I think there has been a definite improvement but I still feel the tension in the muscles, especially in my shoulders, and the pain does come back, especially after using those muscles. I think I need to experiment further with the machine, how much to do and when, etc etc. I am still getting the hang of it.

Other pain that I have is neuropathic pain. The Alpha Stim does not claim to help this type of pain but I was hoping the CES setting might help with generalised pain issues and overall sensitivity to pain over time. No real change so far. I also have very tender skin which feels bruised to the touch on my legs (well all over, really). I think it could help with this type of pain but there are two issues: firstly to do my whole body would take half the day, literally, and secondly the probes use a conducting solution on the ends and that liquid triggers my nerve pain (as does all water/humidity) so I have not been treating my lower body very much.

The company I bought it from are very friendly and helpful and I think I will be ringing them for more advice soon. I also want to talk to my acupuncturist about it, as he introduced me to it, but I have not been able to see him recently. I have an appointment next week though.

So in summary, I would say that I am happy with my Alpha Stim, but it has taken some getting used to for me regarding the pain relief. It also needs the help of someone else to do my back well, which is not always very convenient, or else I have to use the electrodes which can take quite some time. The CES setting has been really beneficial and I enjoy using that part a lot.

You can read about it here (this link is to the FAQ page as it is a quick intro but there is lots of other good stuff to read on other pages, like research studies etc).

Please support a new project “Art 4 XMRV” by buying Greeting Cards, Matted Prints, Laminated Prints, Mounted Prints, Canvas Prints, Framed Prints and Posters. The images are donated by artists who have been affected by ME/CFS.

Art 4 XMRV is a collaboration between artists who have all been impacted, directly or indirectly, by Chronic Fatigue Syndrome also known as Myalgic Encephalomyelitis (CFS/ME). Leading healthcare professionals have stated that symptoms can often be more severe than late stage AIDS, Multiple Sclerosis and Cancer. This illness is a great deal more than ‘feeling tired’.

In October 2009, the Whittemore Peterson Institute in Reno discovered, thanks to their groundbreaking research, that up to 90% of all people with CFS/ME and up to 7% of the healthy population were infected with a recently identified retrovirus called XMRV. XMRV has also been linked to Autism and Prostate Cancer.

Once a retrovirus infects a person it becomes part of that person’s DNA and stays with them permanently. HIV is the most widely-known example of a retrovirus. It is estimated that over 17 million people worldwide currently suffer from CFS/ME and they are all looking to the Whittemore Peterson Institute for answers. The sad truth is that the WPI are not being supported by Government finance. Public funding is therefore desperately needed for further research and clinical trials.

Art 4 XMRV is an attempt to help raise money for the cause. 100% of all money earned through sales will be donated to the Whittemore Peterson Institute.

Yes, I have been to more medical appointments and have more on the horizon.

Last week I saw my new GP for the second time and am pleased to report that she is still as good the second time around and I will be sticking with her. She was running very late though and we were there two hours in total so it was quite a struggle. I get the impression she always runs late as is the type of doctor who is more concerned with doing a good job than sticking rigidly to the time constraints imposed upon her. I don’t mind waiting really if I will get a good appointment where I will be listened to and taken seriously, though it is not great when you are unwell and it took some getting over. She did look quite frazzled though and my partner did comment that if she carries on doing such a good job she may get burn-out! I really hope not. Outcome of the appointment is that I am on a higher dose of Gabapentin for my nerve pain and have started Mebeverine for my IBS.

I have not taken any drugs for my IBS for many years (just relying on dietary changes, as well as having tried lots of probiotics but with no real change) but after more than two years of a restricted diet it is still flaring up and painful there is no more I can do on that front, so thought I would try again with the drugs. About ten years ago I tried them all and had no improvement, but I think there is a slight improvement already after just three days this time! I need longer to really know but I think there is less pain at night-time and perhaps things are a bit calmer as I have not been playing it especially safe food-wise. The GP did suggest that I could try Amitryptaline at a low dose to help with IBS but to ask the POTS specialist if it’s ok.

So this week I have been to see the POTS specialist. She says Amitryptaline not a great idea unless absolutely desperate as it can lower blood pressure and increase heart rate – two things I do not need.

We also discussed the drug (Dilzem) that she started me on last visit. I think it has helped my stamina and also my recovery time after doing things, enough to be a trend but not in a really dramatic way. It is better than nothing. She did not change my medications this time, only the timing of one tablet and I will be wearing a blood pressure monitor for 24 hours soon to check how I am doing. Based on the results of that she will know if I can tolerate higher doses of drugs or not and adjust as required. I hope I will get to try higher doses as I know POTS symptoms are still affecting me daily and where would we go from here if not? I am not sure!

So that is it, two pleasant appointments which makes a nice change.

On a vaguely related note, my trigeminal neuralgia has been bad the last few days. Gabapentin is a listed treatment for this condition, though not the main reason I am taking it, but still it keeps flaring up. I am concerned, as reading about it, it seems that it is something that gets worse and worse over time and can become very bad. I wonder how bad it would be now if I was not taking Gabapentin? I am seeing the ME/CFS specialist in a few weeks and want to talk to him about my neuropathic pain in general and also the trigeminal neuralgia. I would like to understand how these conditions fit into my ME/CFS (if they do) and what I can expect long-term with them. They are quite concerning and debilitating on top of everything else. I also want to ask him about Low Dose Naltrexone (LDN). This is taken by some people with similar itch/nerve pains as me as well as people with ME/CFS so I think it might be worth trying. I hope he will be open to letting me try it without having to fight for it.

I have just received an appointment for the Pain Clinic at my new GP surgery. It is for next week. I have already had an initial telephone call and also filled in an assessment form for them. The doctor I will be seeing seems very intelligent and not patronising and keen to help me understand my pain issues. He did talk a lot during our phone call about Fibromyalgia and pain sensitization (or something similar to that) which is good but I don’t think the whole picture. I do not have a Fibromyalgia diagnosis and may have to take some info with me about pain mechanisms and ME/CFS as they do seem to be distinct entities and there is often much pain in ME/CFS in it’s own right… At least he is willing to talk about biological processes though, and did not sound too much like he was just going to teach me breathing exercises. I doubt he will have much to say to help me understand the nerve pains though. It will be interesting. The appointment will be an hour long, which will be a challenge in itself.

It would be nice not to have all these medical appointments. I know various people with ME/CFS who rarely bother to go (or know there is no point with their existing doctor) but I seem to have various issues that I really cannot ignore and that for which there does seem some hope of management/improvement with medical treatment. It would be so freeing to not use all my energy up in this way and just to be able to focus on going out to do things that are pleasurable or useful but it seems it is not to be. There are things I have never even brought up with a doctor for many years, or not at all, and I feel with this new GP that it might just be worth it to discuss all these minor loose ends sometime. How nice to feel that I can, even if there is nothing to be done. I am so glad I left that last GP surgery – all I ever got was a lecture and the impression that I was wasting their time or I got the distinct impression that they did not know enough to make it worth bringing anything up in the first place! Oh for the day when ME is universally understood and treated seriously… and treated effectively! It should not be a lottery just to get a GP who listens and has a “let’s try” and a “can do” attitude regardless of any actual effective treatments…

Yesterday we went out to The National Glass Centre. I have been really struggling mood-wise (and physically as usual) since Xmas/New Year. Mostly I think I have just been in recovery from the festive period but I have been surprised by my little depressive bout, as I have been fairly stable lately on that score.

Anyway, I have been resting up and struggling on in equal measure and just feeling more and more trapped in the house so I decided the time had come to prioritise mental health over physical (a.k.a “to hell with the consequences!”) and do something fun. My partner reminded me that apart from going away over Xmas (involving travelling by car, being in a different house for a few days, then coming home – so not really giving the feeling of getting out and about, strangely) I had not been anywhere except the odd health related appointment since November when we went into town. That explained a lot.

It was great, a bit of detail can be found here.

I feel so much better today (granted physical payback has not really hit yet). I am buzzing with enthusiasm for creative things, and feel much happier. Just managing to go gives me a renewed sense that fun things are possible every now and again, and need not be stressful if they are the right size of outing in the first place.

I am hoping that the flurry of snow that fell this afternoon does not mean we are going to have a repeat of December’s weather, as I would like to leave the house again sooner rather than later!

Hello all,

I am not sure what to write about today, or how much to say. I am bored of writing how I am, which symptoms are bad and so on, though I know it serves a purpose for me in terms of tracking my symptoms and health, which is one of the reasons I do blog. I am bored with it though, and so it seems is my partner, understandably. We want to escape the never-ending discussions of how I am, which parts hurt and so on. But how? I honestly do not think it is possible.

I do not need to tell you readers who are also ill and living with other people the difficulties of being in any relationship when there is an unwanted entity (the illness) hovering around affecting everything we do, or more usually cannot do. Things are ok, and we are coping but I am just feeling a bit emotional at the start of this year.

As well as wanting me and more especially my partner to have a break from it all, I am deeply worried about a friend of mine who is in hospital. I have heard from her dad that she has had an emergency operation and is very unwell, but nothing for a few days and I cannot help but think about her and her start to 2011. She has not even been able to open her Christmas presents yet. She is on my mind a lot.

I think I am also just in recovery from going away at Christmas. I feel a sense of achievement and adventure at having gone away – I spent a few days with my partner’s family. It was good and I am very glad I went in many ways. I was made to feel really welcome and they tried really hard to accommodate my needs and it was nice to feel part of something but it was also pretty hard for me at times.

The main issues were the travel (which took 4 hours on the way there and 3 on the way back; even as a passenger that is really a lot for my poor brain to cope with. I find it very challenging neurologically to be in motion and to have such a lot of visual stimuli rushing past at the same time); the heating, which despite other people saying they felt cold was on really high and it was the hottest house I have been in for a long time (which obviously is really bad for me in terms of POTS as it means my blood pools more easily and less gets to my brain which makes me feel worse and have lower stamina and more neurological symptoms, like tolerance of noise…); and also the noise!

When there is noise my stamina is very limited and the combination of Xmas music on a loop and/or a tv turned up loud for some of the family who can no longer hear very well (and refuse a hearing aid) as well as the conversation of up to twelve people on top was at times hard to bear. Added to this was the noise of a house full of people when I was trying to rest, especially when a few drinks had been had, despite my ear plugs! People really did try so I am not blaming them, it’s just that normal festive behaviour and this illness do not mix. It is not like everyone should sit and shiver in several jumpers in silence just so that I can “do” Xmas!! It would not be fun for me or anyone else that way.

Overall it was a successful visit and I would take on the journey again when things would be quieter and hope that perhaps I could be able to leave the house when there next time to explore the city a little. It did feel strange to just be in the house all the time and not be able to situate it or explore; which seems ridiculous as I rarely go out to explore my own city, but when you go somewhere new I suppose you feel it more keenly that it is the normal thing to do. I know there were art galleries within a ten minute radius, and that hurt!

I have been feeling a bit stir-crazy actually and the trip away almost added to it for the reason given above. It gave me a sense of adventure if anything! I have not left the house much for a long time, other than for appointments, and the weather has been a big part of this. It has been just freezing with snow and ice everywhere – hardly wheelchair-friendly. I did go over to see a friend before Xmas and that was really nice, though it felt so surreal and I realised it was nearly a year since I had visited her home. She has had to visit me most of the time in the last year. Another reason is that my partner is just so busy and there is no-one else to take me out. I really find it hard to go anywhere without my wheelchair and that means being accompanied. I need to perhaps just take a taxi sometimes and sit somewhere interesting and comfortable for a while, but finding somewhere comfortable (in terms of chair, but also noise etc) is quite tricky.

Good things already planned for this year are a lecture about printmaking at a local university at the end of March. It is just an hour so I am going to give that a try if I can. Also we have booked tickets to see Iron and Wine in concert, which is also not for a while, but something to look forward to. Some of the most memorable and best things I did in 2011 were going to concerts, which has become easier now that I can sit in my wheelchair, so I hope to keep finding good people to see this year. It is great to go out with my partner and share such experiences with her. We don’t do enough fun things together.

It is my birthday this month and some time has been kept clear to do “something”. It is not yet clear what I will be up to doing, or what the options are but I am looking into it!

I hope to continue with my art immersion at home (see blog post on my creative blog) and finish the painting I am working on and move on to the other many creative things I want to work on. So many ideas, so little energy and ability! Never mind, art is a good distraction from illness. I also want to read more. I have got a Kindle for Xmas, though I had it early, and I am really loving it and how much easier it is for me to read with than a real book.

ME/CFS Awareness

ME/CFS Awareness

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