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I am very late in blogging about my last GP appointment, as things have been very busy here and I have just not had chance. It was months ago but I do want to just say that she was excellent again and confirmed to me that even little gentle stretches that are not held long are beneficial and to just give it a try.

I have been doing these exercises (well, 7 or 8 out of the ten, as a couple feel wrong and the other I can only do sometimes due to my shoulders seeming to dislocate a bit) every day for weeks now and I am feeling that they are certainly getting easier. I can hold them for a bit longer and can do more than I could at the start. I think there is a looser feeling, though I am still getting pain in this area. It has been painful for many years so I am not going to get rid of the issue any time soon! I think the fact that the area feels good afterwards, even if it builds tension back up pretty quickly, is a start in the right direction. It feels like it increases blood flow.

Giles explains how to do the exercises on the video so I won’t explain them. I tend to do them in the morning. If the area feels very stiff when I wake up, as it often can, I put a heated wheat bag around my neck for a while before I do the stretches to make sure the muscles are warm and ready. I stretch while being aware of my breathing – stretching on the out breath. I don’t do a full stretch, only feel the first small pull, and go a tiny bit further. I have found that any holding of the position leads to increased pain so if I start at the full stretch (before pain) I cannot hold it long as it becomes uncomfortable. I just find a mid-point so that I can hold it for a little bit longer. In areas the seem to become sore very quickly, I just do several very gentle stretches in succession.

I had terrible headaches when I started these stretches, but this was due to a medication increase. It did however stop me from doing the exercises some days and I stopped for a week or so to test if they were contributing to the head pain. There did not seem any link so I am now more confident and do them every morning. My headaches have improved.

Now that I have seen some benefit from this area I would like to expand my stretches to include other areas of the body. As I said in my last post, I have various sheets with diagrams of exercises given to me over the years by physiotherapists. I just need to find which ones will be most useful to spend my energy on in terms of being useful in pain/tension relief and take it really really gently so as not to flare up my pain. I find that I can injure myself incredibly easily. I get days of pain from very simple things, like leaning over to cuddle someone for a couple of minutes, or holding a shopping basket on my lap when in my wheelchair, even when not really supporting it, just holding my arm in that position… Life feels very hectic at the moment, so I won’t be starting any new exercises just yet.

I do believe there are serious problems in muscle function that are unrelated to underuse of muscles due to inactivity in people with ME. I am just trying to keep things moving and maintain the function that I have rather than necessarily build myself up. We will see how it goes. I just want to minimise the long-term impact of living like this if I can, in terms of secondary problems such as osteoporosis and loss of core strength, which is already a problem for me; which could make things harder than with just having ME/POTS etc. in future.

I have wondered about contacting the physiotherapist from the local CFS service to get help and advice with this, but I have not found them very useful in the past. I wonder if they would do a full assessment of me? Something to think about for next year. In my much more recent POTS specialist appointment she suggested seeing a physio, in relation to my mobility getting worse (I was saying I could not go out without my wheelchair these days and did not think I had dramatically improved since seeing her (though some acute symtoms have improved), particularly in relation to leaving the house/stamina). She did not ask why my mobility was worse or suggest exercises specifically for helping with POTS symptoms. When I asked her a couple of years ago about leg exercises (meaning very gentle movement) she said not to as it was too early… I am sure there must be something I can do, but I am not sure the CFS physio will be very responsive to my needs as he overestimated what I could do when I saw him before, and I am worse now… we shall see. I think an in-depth phone call will be in order before I waste energy going down there for an appointment.

I had a really great appointment with my GP last week. I have only been seeing her for a short while so we are still getting to know each other, and it was great to feel that my hunch that she is really great seems to be ringing true.

She spent a long time with me, and she does not rush me when I am trying to explain things which really helps me to concentrate and not forget important things, as well as it being less exhausting. She really listens and her response to things I suggest is usually positive, such as “yes, that is certainly something we can try” or “I will speak to a colleague/look that up and get back to you”. It really is a breath of fresh air after my last GP surgery.

This time was really a drug review and a review of symptoms to find what combinations might work best. I have come away with plans to make several changes in my own time, one at a time and to experiment with what works best for me. She really treats me like and intelligent adult and is not patronising at all. It is so great.

(Has anyone tried Clonazepam and do you take it in the day for muscle tension/pain or sensory overload/neurological symptoms? I have started taking it at night and sleep better but my symptoms remain…)

I also asked her about stretching and gentle exercise to maintain what function I have over the long-term. This was also related to the risk of osteoporosis of being indoors so much and not being physically active. She said that any movement is better than none, however small. I have been told before that stretching is pointless unless you can hold it for 20 seconds, and that doing exercises is also pointless unless you keep increasing the amount you do (like graded exercise therapy). My GP says she will ask a physio friend of hers about the best way to stretch very weak and trembly muscles, and how to build strength gently. She said I won’t be able to tell any difference for a long time as things will be so slow, which is a good attitude I think, rather than the pressured approach of people I have met before. I am willing to give it a try. I told her that I have a heart rate monitor and would wear it to be sure I was not stressing my body too much, and in order to keep my heart rate low I will have to do most of it lying down. She said that was excellent. I have dug out the exercise sheets given to me in the past by physios and the CFS management team, which I failed to do regularly before as the approach was not tailored to my severity. I just need to work out what I can actually do and also which things it is most important to focus my energy on, as I won’t be able to do anything on days where I am in recovery from doing something, or having a flare up: I need to choose wisely which stretches/movements will have most all-round benefit. She did say that even stretching would probably cause increased pain initially but not to worry about it if being very gentle. I hope that longer term I can reduce my pain levels through being a bit stronger and my muscles being less tense. I do think that there are various causes for muscle problems in ME and that it is just not possible to exercise all the issues away, especially nerve related issues. I can only see how my body reacts. I don’t think anyone should try to exercise unless they feel up to it, and I certainly will only be doing a little bit during my best time of day and on better days… I use the word “exercise” very loosely!

It’s worth a try, even though there are other things I would rather be doing with my time and energy! I will be starting with just a few minutes so will just have to discipline myself… again. Maybe some stretching then a treat!

Went to the new GP surgery today to meet a second GP from the practice. I was told to see this one about the progesterone pill that I take long-term to stop my periods. I was a bit worried that she would not be understanding and want me to change what I take or even stop me taking anything. This would be very bad for me as it has really changed my life not having the awful effects of my hormonal cycles to deal with all the time. It had a huge effect on my functioning and energy levels for almost the whole month.

She was lovely though. She spent lots of time with me even though she was running very late already, and said that although she would contact the specialist I originally saw who put me on the pill just to check that it was ok for really long-term use, she could see how much good it was doing me and that changing it would potentially cause me a lot of disruption and problems managing my condition.

Seeing as she was so nice I took the opportunity to ask her about referring me to a pain clinic, while making clear it was not urgent and I did not want to make her run even more behind. She seemed happy to deal with it and genuinely wanted to do all she could for me today.

She firstly suggested that the CFS specialist who I have been referred back to might be able to help me and he could decide if I really needed to see the pain clinic or if his team would help. I said that firstly that would make the timescale very long as there is always a three-month wait to see him. Also I had not had any help with specific pain issues from them in the past, even the physio gave me advice that was not tailored to my needs and severity.

She listened to me and the kinds of pain that I experience and said she did think the pain clinic would be best. She said she needed to get more information and look at my notes more before deciding where to refer me to, adding that there was a pain clinic held at the GP surgery which has short waiting times and that I may get to go there. She is going to ring me soon to let me know. I was very impressed with her attentive approach and willingness to commit even more time to me outside of the appointment.

When we discussed the pain issues that I have, including bladder discomfort, I said that I felt that everything was more sensitive and more painful due to neurological problems, rather than the bladder (or other body part) itself, and she said “yes, you are right, processes of central sensitization (can’t remember the actual sentence, but something like that). I nearly fell off my chair. A doctor who is knowledgeable enough about the mechanisms of ME/CFS to engage in a conversation about such things and is also happy when I express some knowledge about my own condition! Very rare in my experience.

She also knew what POTS was and did not assume my partner was my mother – bonus points all around!

I feel like I have struck gold, but am also aware that she is not easy to get an appointment with. She specialises in reproductive stuff, which is why I was sent to her for the pill issue so I may not be able to see her regularly. Also she is very popular from the impression I get. I hope that if I have anything complex to discuss I will be able to see her though, if not all the time. I do think she would be a good person to ask to do the DLA form evidence – she seemed very thorough and I think would treat it with due importance. I would gladly go in for a 7am appointment (if they did them) or wait a month to have another appointment like this one!

I feel today that the leap into the unknown I took in changing GP surgeries has paid off. The first GP I saw was nice, but this one really seems a cut above anything I have experienced in a decade or so.

Happy day!

Well, I just got back from meeting a new GP at the new surgery I have registered with. She was nice, seemed calm and able to listen. She was reassuring about giving evidence for my benefit claims, saying that she would  ring me to go through the form at the time. She told me to make double appointments and that there may be a wait for an appointment of several weeks if I want to see the same person every time. I said that didn’t matter as nothing is ever that urgent. I did not get into anything much, as I knew it was just an introductory appointment and I think this approach worked well. I am going to try to be a better patient and not annoy them…

She expressed concern that I am taking Norethisterone (progesterone pill) all the time to stop my periods. She said she would like me to talk to a nurse specialist before deciding whether to continue with it long-term or to see if there was a better solution. I am happy with that as I was not sure what the long-term plan is, as when my old doctor brought up the subject, I wrote to him to explain how I saw it and it was never followed up. I hope this doctor will be more thorough, she seems so on first impressions. I don’t want to return to having periods, certainly not if they have the same impact on me as they did, but I am happy to check out the options.

I did ask if there was anyone with other ME patients, or who had some knowledge of it, and she did say that no-one would have specialist knowledge as it is a rare condition. I questioned how rare it is, and said there are more people with ME than MS, and she said MS is rare too! (I am sure they are both rare, but I bet they all know more about MS… obviously I did not say this). I know they won’t have specialist knowledge, but it would be nice if they are willing to learn a little. We shall see.

I will see the nurse, then make another appointment with this doctor to see if we can get to talking about more specific things. I have symptoms I have not even mentioned to a doctor before so maybe I will get to that. It’s early days, but I am glad I have taken the plunge to try someone new. At least I was not spoken to like I was a child; so old doctor 0 – new surgery -1 on that score.

Just been to visit my GP. (A primary care doctor, for those not in the UK – basically the “family doctor”). He is the one I have (had) settled for from the three available at my local doctor’s surgery to be “The One”. So I went in and tried to talk to him about what to expect from a GP and ask him if he is willing to be “The One”. He turned it around and asked what I want from a GP, and I said I wanted someone to have a broad overview of my situation and I wanted to be able to discuss symptoms even if there was no obvious treatment, and that I wanted to understand my symptoms as well as possible. Also that I was not looking for a drug for each thing, more the understanding. This may not have come out very clearly, or actually be the coherent description of what I do want/expect, but I was not prepared for the question, or feeling very articulate. I still don’t know what he feels he can offer, but I am getting an inkling.

He basically responded by saying that he cannot help me with the understanding and needs to refer me to the specialists for that. He says my muscle issues sound like ME so I need to see the ME/CFS specialist for that. That is fine, but I voiced my concern that he would only want me to go back to the CFS Lifestyle Management Group and that I do not want to go back, as I felt I had taken what I could from it and going to appointments is hard. He gave me a long lecture  on being open-minded (including an analogy to driving a car and building up bad habits). I tried to clarify my experiences (as surely I know more about them than he does!) but to no avial. He just wants me passed on to someone else, it seems.

He also said that this CFS specialist can refer me to the Pain Management Clinic (PMC), as if he (GP) does it and I just turn up they will not know what to do with me as general approaches won’t be specific to my condition, but if the CFS specialist refers me it will be different (I am not sure about this logic – it’s just a  referral letter). Seeing as the suggestion came from the POTS specialist, that means I am now seeing three people before getting to see that PMC. Wierd.

He did not really respond to me wanting someone to have a broad overview of my condition. When I was trying to answer his question about expectations, I gave him the example of my nerve pain and he cut me off saying he wanted general, not specific expectations. Hello? Let me finish my sentence. Try to understand what I am saying. Understand that I have cognitive issues. Stop trying to rush me into conforming to your model of what the conversation should be.

This was not helped I think by the fact that we had booked a double appointment but the receptionist had obviously not registered this so we had the impression we had longer than he thought. He started talking about booking a double and we said we had and then he said we needed to repeat our request to make sure (another lecture given) as if it was our fault, when my partner says she was very clear about it.

I also got the lecture I have had before from GPs as I mentioned I had seen nerve pain talked about in relation to POTS on a forum. Instead of trying to understand why I might use the internet, or giving me credit for being an intelligent person and being able to distinguish opinion from fact etc etc, I got the patronising talk about the dangers of finding information on the internet. If he is so uninformed (says he does not know that much about ME) when where am I supposed to go? Eh doc? I think GPs should know more about such a common condition and frankly, they should go online and read some recent research, as they are obviously not getting very good info from the BMJ/NICE.

He did say he was happy for me to give him supporting info when he had to write reports for benefits etc so that he has an idea of my situation, and instead of saying he would like to know more about it in person, he started on about the double appointments, how many hours he works, how he is not always available! Ok then.

So I have a referral to the CFS specialist and I am to go back for a double (repeat DOUBLE!) appointment in a month. While I think he is happy to see me more often, he certainly has his own communication style which is not supportive or condusive to building the kind of relationship I would like, you know, where I am listened to!?!

Went to the hospital again today to see the POTS specialist.

Firstly she has started me on Gabapentin for pain and itching – she had mentioned it last time and I am so glad she was still keen for me to try it as I have read about it and talked to people who take it and it does seem a fit with the problems I am having. I asked her if it is basically that I am having symptoms like Fibromyalgia (FM); that it is neuropathic pain and she said yes, and that it is common with CFS and that an additional diagnosis would not help me (there are  additional treatments recommended for FM so there is no point).

This brings me to the POTS medications. There are no treatments recommended specifically for POTS, like ME/CFS and FM (or is there one for FM in the pipeline? I forget). She started me on a new drug last time which is an angina drug (Ivabradine) to slow my heart rate to see if that helps. I am unsure if it has helped but I think that it possibly has helped a bit. It has been hard to judge as it is a small dose and also there has been so much going on with my itching, pain and sleeplessness that I have barely been thinking about my POTS symptoms (but that may be a sign in itself that it is working!). But all this is now irrelevant as my GP has said I cannot take the drug as it is not a recommended treatment for my condition and it won’t fund it, whether it helps or not. Seeing as there are no drug treatments listed for POTS they are basically saying I will not be treated, even if the specialist thinks it might help. This leads to the conclusion that the only reason I AM being treated at all (I take Midodrine, an unlicensed drug that I get through the hospital) is ironically BECAUSE the drug is unlicensed so the specialist can give it to me (I think because it is part of research) and override the GPs who have complete control over what drugs can be prescribed. Apparently even in the US where I thought POTS was much more accepted and treated there are no drugs trialled and approved for it. I see again how very lucky I am  to be getting Midodrine. It seems ridiculous that a seriously disabling condition that can be easily tested for and monitored is not researched more widely.

I am happy to report that Gabapentin is an expensive drug (I want to make them suffer now, ha ha!) but that they cannot deny me that, as it is listed for neuropathic/nerve pain AND itching.  She said if it helps I can then cut down on the anti-histamines which would be good, I don’t want to take quite so many things! 

One good thing is that she is putting a note to the GP to try me on a sleep medication (I did not catch the name) if my sleep does not improve once the Gabapentin starts working, so it is nice to have that option if I need it, without having to wait for months for the next appointment to discuss this.

I asked if other GPs allow people to take the Ivabradine for POTS and she said my GP is the FIRST to deny the patient access to it when she has recommended it! I am shocked about this and asked how I could challenge it. She said I could go and talk to them, but apart from that there is little I can do, except change GP! I am not happy with my GP but I always thought maybe it would be the same anywhere. I would consider changing (as I have to get a taxi/lift to the existing one anyway, albeit a very short ride) but how would I know if  it would be any better before I got there? As I cannot say for sure that the Ivabradine really would help me (as I have not been allowed to give it a proper try) I do not have a very strong case to argue anyway… I also worry that a new GP would see that I had been refused and think I am going to be a troublesome new patient to have and not want me and my mammoth medical files transferred over to their practice. This is all about money.  I don’t think they can say no, but there is little point in moving if their attitude is as negative towards me as it is where I am. It is a concern in these economic times. I am unhappy that my GP seems to be saying no when others say yes to this drug. Should they have the power to choose, and operate a “postcode lottery”? As it is not the sanctioned use of the drug I suppose it is down to their discretion, but when there are no drugs approved for a condition where does that leave us? Without treatment is where. Apparently there is little interest in researching this rare condition (but would it be seen as so rare if people were actually diagnosed properly?). It it not about helping people who are suffering from the most disabling conditions, it is all about making money, after all.

ME/CFS Awareness

ME/CFS Awareness


March 2017
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