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I see on reading my last post that well over a month has passed. I had a great time with my sister and hope she will come again soon as possible!

Since then I have had a nasty cold virus which knocked me back a bit. Very frustrating as although I am now recovered it took much longer than a cold should and I have not had the stamina I had previously. I still don’t actually. So much for the stability I was talking about in my last post! Things are stable, but only because I am doing very little most days.

I have been out in my wheelchair for a few walks, and that has been lovely. I hope to do that regularly now that the weather is warming up as even half an hour out of the house can really be beneficial. I like it when I see unexpected things. The first one I met two horses, one was very interested in my wheelchair and it only just missed being covered in horse drool (I had stood up to say hello to them, and was glad I did as horses are a bit intimidating close up, especially when curious!). The second time I saw a frog popping up to the surface of the water at the pond, presumably to breathe, then disappearing back into the murk. It did that several times. Then the last walk it was sunset (I got very cold!) and I saw fish noses or fins then a ring rippling out from where they surfaced to feed. There were lots of them, making circles all over the place. The water was very still so the ripples lasted for ages. It was very peaceful.

I have also been having some massages and they have been great. After the virus I just ached all over, right in between my ribs, front and back,  from coughing and like I had strained myself from the neck down really. Also due to my blocked nose I was better sleeping on my back as it seemed to stay clearer but that made my lower back pain flare up quite badly. I cannot have massage on my legs due to my neuropathic pain and general tenderness, but have really felt the benefit on my upper body. It has taken about three sessions to feel better though, to convince my muscles to give in to it. Obviously I will always have pretty much constant muscle pain and tension but I think it does help to ease it off every now and again. I have not had acupuncture for a long time but I will go back in May and stop the massage again soon (maybe just one more?!). I am not supposed to be having them as my acupuncturist said he did not think deep massage was good for me – shhh! Well I am sure it’s only moderate massage (not deep) so it’s FINE! Also it feels so good, so tough bananas…

In my previous post I also talked about wanting to use my energy for more creative things, having put so much into my benefits application so far this year and having had little energy left for fun or creativity. Due to the virus I have not done a lot, but I have been making some postcards for my friend, and that has been fun though each time I do one it creates much neck and upper back pain for a couple of days – I need to find a way to sit that is better but there seems no magic answer. I need to try some office chairs in a shop and find one that is supportive in all the right places, but have yet to make that trip out. I think that drawing (and other creative activity) by nature is hard to manage as when you concentrate on something like that you cannot help but tense some of your muscles as you draw. When those muscles have the stamina of a gnat, that causes pain very quickly! I have been enjoying the challenge of the postcards though and the sharing of it with a friend (she sends me a card she has done and I respond in kind).

The other thing I am classifying as creative activity is gardening. The weather has been lovely and I have been getting that spring feeling and my partner has been helping me by weeding, chopping things back and preparing pots for me. I have sown some flower seeds for the garden and also some herbs indoors. My cold frame is up and things are coming along nicely. I hope we will tackle some veg seeds next weekend – carrots, beetroot and spring onions!

I have also started taking some digestive enzymes over the last couple of weeks. I will blog about that separately…

In the last few weeks I have noticed a gradual improvement in my stamina. I think there are a number of things that are potentially contributing to this improvement, which is great whatever the reason, though I would like to know what exactly is helping so that I can continue with it!

About six weeks ago I went to see the POTS specialist and had a list as long as my arm of current and pressing issues – she (rightly) could not deal with them all and it was not a successful appointment (for that and other reasons) and it upset me, but I could not pick and choose between all these issues as I was just overwhelmed by various issues which were all severe. These included: Sleep, Neuropathy and Trigeminal Neuralgia, Muscular Pain and Tension as well as other pain issues, POTS (this was low down the list so you can see how bad the other stuff was!), as well as medication issues.

She gave me a new medication to try for POTS (Diltiazem). I did not start it for the first few days as other outcomes from the appointment were that I should stop taking my sleeping tablet (eszopiclone) to see how I am without it, and also I had only just increased my dosage of Gabapentin (for Neuropathy) over the previous few days, so I did not want to confuse things by doing it all at once.

Also around this time I was having massages of my back, neck shoulders and head which were pretty intensive as the pain and tension there was really getting unbearable. My head felt so tight and painful and my scalp was really tender to touch in places (always is a bit, but was getting very bad and more widespread). My neck felt very painful and weak and was clicking in a very disturbing way low down my cervical spine. Shoulders and upper back, well, the usual. A couple of days after the third massage I felt the tension really lifted and I no longer was taking painkillers every single day. The clicking was also much less frequent – I think the muscles were not clamped so tight around the joints.  This was also the time that I started taking the Diltiazem, but I did not think it would do anything and apart from the pain/tension improvement I did not feel any different. A few days later I had my first acupuncture appointment.

It was another couple of weeks before I had the second appointment and did the Tai Chi (and “broke” my back). Then another week until the third, when I started to use the Alpha Stim (see previous post).

During the last few weeks I have noticed a gradual increase in what I can do in the day. I am certainly more active, particularly mentally. I am also sleeping much better and dreaming vividly all the time! I have taken the sleeping tablet again briefly when my mum was here and it confirmed what I thought. It does help me get to sleep but once it wears off in the early hours I feel more awake than I would have done without it. Very odd. As it is I am sleeping much more deeply than I have for a long time with no drugs at all. I am still getting up several times for the toilet but am just getting back into bed and back to sleep easily. I am also sleeping deeply most days and later in the day than I was. It is working for me despite being bad in theory to sleep late in the day (sleep hygiene blah blah). I think the higher dose of Gabapentin is helping to control my nerve related pain and discomfort which used to flare up every time I got out of bed (or in!). It is still there but milder and as long as the bedding is smooth and flat underneath me (a constant battle) it is usually ok. I think with me Gabapentin takes a few weeks to reach it’s maximum efficacy. When I first took it, although there was some improvement it was not for a few weeks that it really felt more consistent, and the same has happened with the higher dosage.

I think perhaps the added activity is also helping the sleep. I am being careful not to overdo it, though some days it is hard to stop pottering about with little things, as they all add up. I have at times got that “wired” feeling of having over-stimulated myself, but I am also recovering more quickly. I have had the odd bad day but overall it’s a very positive trend.

I even went out into town (being pushed in wheelchair). We went to three shops one evening and I did practically all my Christmas shopping. Then we went for an Indian meal before returning home! It was really great to have a meal out and I felt pretty good throughout.

I hate department stores (it was only them that opened late) but I did not get over-hot and being in the wheelchair made it much better for obvious reasons (like being able to go fifty times further!) but also in terms of navigation, which I am rubbish at in shops. It is so nice to allow someone much better at it than me to push me around: she knows where the lifts are, where the exits are, how to best get from one shop to another etc. So much more relaxing!

I also find the decision-making hard but as the shop was not too busy or noisy and I had a list of people to buy for, I just stayed calm and focussed and got through it in no time. Such a relief and great to avoid lots of deliveries coming to the door at random times when I am in bed in the day.

The most amazing thing – yes I am getting there, waffle waffle – was the payback… or should I say LACK OF PAYBACK!!! I rested the following days, but was still pottering around more than I felt I should following such a big trip out. Day three I really felt it would hit, but it didn’t really. This is unheard of in my world. I was only saying to someone more moderately affected than me a few days before that unlike her, I am rarely surprised by how ill I feel, as it is predictable: do something slightly more than usual, second day, bam – feel awful. I take a few more days to rest, then carry on with the usual routines. Even my IBS did not flare up too much after the meal out, which again, it usually does even if I am careful about what I eat.

So I was on cloud nine about that. It really made me feel that the improvements are solid, even if I have not felt quite so strong since then. I feel an upward trend again at last. I am kind of hoping that most of the improvement is down to the new POTS drug. It has been about a year since I felt any real improvement in function from Midodrine, the other drug I take for POTS, which has plateaued really, despite some dosage increase. I also tried Ivabradine which I was not sure about in terms of improvement as I had such severe neuropathy at the time I was in a lot of pain and not sleeping well at all, so I could not tell. I could not get a prescription for that in the end anyway.

If the acupuncture is helping too, then all to the good. If I can get a decent improvement in pain through that then that will help me hopefully to move and relax my muscles more and increase my function again. I like to think so anyway. I feel a little hope creeping in…

I have, in recent weeks, been to have acupuncture three times. It has been a really positive experience so far. I had been to see this acupuncturist before, several years ago, when I had paralysis of my eyebrow and forehead on one side as well as trigeminal neuralgia in the same area. He sorted that very easily last time so when I had a return of the trigeminal neuralgia I knew who to call.

Thankfully the trigeminal neuralgia seems to have eased off again for now, but he is going to try to help me with pain and muscular tension in my back, shoulders neck and head. We then may move onto other issues such as neuropathy or IBS/bladder issues, we shall see! There are always more symptoms to try to work on, after all.

It is early days and he is having to try things he has not done before as he does not think my body can tolerate a more standard approach. I already feel better but it’s early days and I think some of that is perhaps due to seeing someone who is trying so hard to help me and who really wants to see me improve. I am interested to see how things progress and what he can do to help me.

He has given me some “On-chair Tai Chi” exercises to do (handy video so I don’t have to remember it) as I told him how I just don’t seem to get any benefit from traditional stretching but that I want to find a way to help my muscles unlock their tension. When I try to hold a stretch (even a gentle one, not at full extension) I experience muscle trembles and feelings of fatigue before I have held it long enough to be effective. Also I get twitches afterwards when I use certain muscles. He explained that the gentle, circular and flowing movements of Tai Chi might be of more benefit. I think getting things moving in any way is great. I also like the “stillness through movement” idea of Tai Chi – it’s like meditation.

The first week he gave the exercises to me I felt I could not do them at all. I did them a couple of times to get the hang of them (it’s a very short video, just a couple of minutes of movement) and my back (already hurting) went into major pain and I had a day of alternating ice and heat packs on it, followed by several days before it eased back to “normal” levels. It felt like my back was broken between my shoulder blades! I also doubted that I could sit upright to do them as this can be a challenge on its own (without the addition of arm movements). I usually sit on a big supportive chair that goes up to head level. The exercise needs to be more upright and with space for arms to move.

He also let me borrow a machine called the Alpha Stim 100. It is classed as a TENS machine, but the current is much different (less) and it can do much more (if what they claim is true!). I used it for three and a half days and could already feel a good improvement in my back pain, particular the part that felt broken the week before and was still sore. This pain all but disappeared. Pain all around and above my shoulder blades and neck were also improved, though still present at least some of the time.

The machine has the pain setting and also a setting which is directly acting on the brain waves. I found this to be really pleasant and effective. It lifted my mood and feeling of wellbeing immediately.

After using the machine for a few days I found I could do the Tai Chi much more easily. The Alpha Stim machine died on day 4 (it was old!), so I could not continue with my trial of its long term efficacy, but I have continued to do the Tai Chi daily. I am also meditating daily to keep up my alpha state, but it is a lot harder than with the machine!

I am very tempted to buy one but they are expensive and my trial was a little short! There has been quite a lot of research done on people with Fibromyalgia with positive results. Details of research done and how it works are on the website . I am missing it… I am going to talk to my acupuncturist about it.

The last couple of week I have changed some medications:

I have upped my dose of Gabapentin, which I am taking for nerve pains. These are mostly occurring on my lower legs, but also affect thighs, arms and other places on occasion.

I have recently (re) developed Trigeminal Neuralgia despite being on this drug, which is listed as one which helps. I had it about four years ago, in conjunction with forehead paralysis which meant one eyebrow did not rise (!) though it felt like it was doing so… a bit odd. This time my eyebrow is thankfully mobile but the nerve pains, while not severe, are quite persistent and annoying. I cannot lie on one side of my face much which limits the already limited positions I can lie in in bed due to other pain.

I have stopped taking Eszopiclone, a sleeping tablet. I am stopping for a month on doctor’s advice to evaluate how I am without it as I have been taking it for several weeks with mixed results. I have had two stern warnings from GPs about the risks of addiction and they say it is usually only prescribed for a two-week period. Well, I have not experienced any issues with stopping it which is a relief and good to know. I think I will just take it when I am having stressful times or when I have things planned that I need to be functional for, like holidays/Christmas or visitors.

It has helped me to sleep in some ways. I was getting to sleep earlier on it, getting up for the toilet only about 2-3 times as opposed to many more previously. I was still waking in the early hours and sometimes having trouble getting back to sleep, though it was perhaps easier than it is without sleep medication which was less stressful. The real issue for me was that I did not feel much better in myself in the daytime for supposedly getting more sleep. Why pollute my body and risk addiction/withdrawal in that case? I will see how things go. It is useful to have something to fall back on if things get really difficult for short periods.

I have also started Diltiazem for my POTS symptoms. It is a calcium channel blocker, though I do not know much about it. It is listed as a drug that can make Orthostatic Intolerance worse (!) but I am only on day two and it’s too early to say either way if it will help me.

I also asked the specialist at the hospital about my increasing pain levels and painkillers, as I am taking more and more these days, though still being fairly restrained. She says to focus on paracetamol and she suggested going to a Pain Management Clinic. I don’t know what they will be able to help me with, but I am willing to give it a chance.

The most exciting thing for me today is that I have just made an appointment with an Acupuncture practitioner. I saw him when I previously had Trigeminal Neuralgia and he sorted that and made my frozen eyebrow move again as normal in just 5 sessions. It moved a tiny bit more each time!

After my disappointing appointment with the specialist earlier in the week I am looking forward to his calming, attentive and holistic approach to my health. He is very well-regarded and very skilled as well as quite a character! I really enjoyed seeing him before and hope he will have a healing and de-stressing effect on me. I primarily would like him to focus on my trigeminal neuralgia and headaches/tension in neck & shoulders as I think they are all connected. I hope he will be able to help with neuropathy and other pains too. He also used to try to help me with temperature fluctuations and I think there is plenty for him to tackle in the long run but that perhaps it may be worth taking a set of symptoms at a time as it is easier to track progress that way. I will see what he thinks.

I have had a few massages recently as the pain and tension in my head, neck and back has been getting really bad. I have avoided them due to my nerve pain for a long time – just lying on my front was impossible even in soft clothes but better now that I am taking Gabapentin. I still would not be able to have a full-body massage (do NOT touch my legs!) but my back is possible. I have tolerated the massages pretty well and they have helped, but only in a very temporary way. I hope the acupuncture will be a little more long-lasting in effect.

(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…

ME/CFS Awareness

ME/CFS Awareness


March 2020