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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!

It was my “birthday week” the week before last. I had a good week! I was careful to rest and eat nothing different (like cake) as i planned to go out into town on the Sunday to meet some friends. It really felt like a whole week of celebrations though, with cards, messages and presents trickling in day by day (unopened of course!). I was feeling a bit down after Christmas, just struggling in general, and it was nice to feel my mood lift (if not my energy levels) and to feel genuine excitement about my birthday, getting some presents and going out to see friends i had not been able to see for months. As usual i was blown away by the kind and thoughtful messages, presents and the efforts people went to in order to make me feel special. It was really nice and a much needed break from the norm.

I did make it into town and went to an art gallery, saw my lovely friends, then also stayed in town for an early meal at a place which does food i can eat (rice and tofu based). I will never forget the taxi driver’s face when we asked him to drive me a very short distance along the road, he seemed to be unable to understand that, yes, we really do mean just along the road there… he didn’t refuse though, which was good. Although i became uncomfortable sitting in the restaurant with heavy blood-filled legs, i felt pretty good while out and it felt so nice I did not want to go home. I knew i had to but it felt like so long since i was out and about, i did not want it to end.

It almost seems easy when i am out and not feeling too bad and i find myself wondering why i don’t manage such things more often, until i remember the whole week of resisting the urge to leave the house (despite feeling quite stir-crazy at times) or do anything more than the basics, eating safely, the morning of lying in bed trying to get that extra boost of a nap, the day before of preparing myself, making sure i was bathed, hair washed etc so i did not have to do before i left, and the inevitable recovery time which would be just as long, all for three/four hours of being out.

This week since the trip out has been a hard one. I did not get a proper full recovery from that before other things happened. A decorator came the next morning which i had to get up for, after not sleeping well at all (as usual after doing something stimulating/exerting myself in any way). As it happened i managed to have a bath and go back to bed and sleep with my earplugs in while the decorator was here and when i woke up she was almost finished but still it was not as relaxed as i needed. My stomach was upset after the meal out, despite being so careful, which always saps my energy. Then there was the hospital appointment a couple of days later which should have been quick and easy, taxi in and out. Long story short, i looked on the website to find the appropriate entrance but it was incorrect and i did not ask for a wheelchair transit as i did not know how far it was (thought i was ok and receptionist made it sound like not too far) and walked far too far. Had a POTS episode (didn’t actually pass out but got to the department in a bad state, could hardly stand/breathe/talk) had the very quick appointment  after recovering a while in the waiting room and then went home. That evening i felt awful and i am still recovering from that. I also had to pop out briefly with my partner on Friday, she drove me only ten minutes each way but i ended up sitting in the car for 3/4 hour and although it was no exertion and i was relaxed and warm enough, it just sapped that little bit of energy i had left away… Last night i could hardly function and the tv was too much for me even really quiet so i was in bed from early evening and only just got up properly about 16 hours later. I have slept a lot so i hope i am ok now for my dentist appointment tomorrow… very tempted to cancel but i really need to go, it is overdue.

There is more plastering/decorating happening in the next couple of weeks but i won’t be alone with them so hopefully i can ignore it mostly. I hope things calm down a bit as i hate getting myself into that really bad state by overdoing it. It is distressing to feel so ill and incapable of simple things (like holding a mug without dropping it – it bounced luckily). I have felt quite emotional and i think that for me is one of the main benefits of pacing well, it that i can avoid burning out completely and feeling so helpless. When i do very little i can still feel pretty bad, but it is different to the feeling of teetering on the edge of total meltdown… some little voice says, have i broken myself this time? Will i get over this crash this time? My usual level of functioning may not be great but it feels so different to that.

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…

ME/CFS Awareness

ME/CFS Awareness

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