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So, i went to see the POTS specialist this morning for my 3 month review and this involved setting my alarm for seven am… i have to take my midodrine then wait half an hour before rising so i lay there until half past trying to convince my body to rouse itself… it was hard. I had a little breakfast then my partner drove us to town. As it happened the rush hour was lighter than usual and we got there quite quickly, but happily i was seen a bit early too.

I was told last time that she may give me another drug to try on top of Midodrine when i go this time, but had not told me what it may be. I had a bit of a nightmare thought a few days ago that it may be SSRI anti-depressants as i have read they can help with POTS, and also i know that beta-blockers are used too (they have side effects which don’t seem good for a pwME). I started remembering all the side effects and experiences of being on anti-depressants and started to worry about what to do if this was her next plan for me. One the one hand, if it would help the POTS is it worth trying again, despite my negative experiences and associations? I was not sure.

But thankfully all she suggested was upping my current dose again and taking more of it earlier and not bothering with any at tea time. I am happy with this as although i have not felt great the last three months and the first two months after upping the dose last time i really didn’t think it had made a lot of difference, the last few weeks i have felt stronger in myself and think at last it could be midodrine having a positive effect. Month two was plagued by wedding recovery and virus, so that could have delayed any awareness of it working being apparent.

I did ask her what the other drugs may be that we may try in the future. She reassured me it would not be an SSRI, but a new drug to slow the heart, or Florinef, which i have heard of. So i am happy to hear that.

The meeting was over pretty quickly and i came away feeling like i had not said something. I often feel like this though, especially when i have been building up to a meeting for ages then it is over so quick and i don’t trust my brain so much these days to remember everything either.

I did not mention the urine test i took, but more importantly i did not mention the muscular pains and tensions, headaches and skin tenderness that continue to plague me. They are more ME related than POTS related but who should i talk to about them (if anyone)? I am no longer seeing the ME specialist as he said i didn’t need to see them both and the POTS specialist deals with ME patients/diagnosis etc. but when i see her she doesn’t ask about those things. My GP would probably not have the specialist knowledge about ME and I have never got much useful out of them about specific symptoms before. I no longer see a particular GP, i just take lucky dip when i go as i have given up on the one i used to choose and have not settled on a new “favourite” yet. I only really go for sick notes anyway as my employer still wants them(!). I think i will see if these symptoms improve over the next three months and if not i will make a mental (and paper!) note to mention them next time i go. Life would be much more pleasant and productive if these symptoms were not so often present… I think the POTS specialist thinks that all my symptoms will improve as the POTS is treated and improves – this has largely been the case, but has affected a few dramatically and some not so much.

We shall see, as always…

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!

(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…

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!

ME/CFS Awareness

ME/CFS Awareness


March 2020