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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!

 Or should I say ME/CFS/FM Awareness Day, as this year I want to talk about Fibromyalgia… even though I do not have this condition.

I suspect that those of us who do not have Fibromyalgia, even if we do have ME/CFS/CFIDS do not really know what exactly it is. I know a couple of people (not that well, admittedly) who have Fibromyalgia, and still had only a vague idea of what it involved.  My basic understanding went as far as “ME with more pain” and “warmer climates help”… Recently i have been having more intense and different (for me) pain and have suspected that i may be developing some Fibro-like symptoms, so decided to look into it further.

*Please note* I have not been diagnosed with Fibromyalgia, nor am i any kind of expert on the subject, but i will try to link to information that will help to explain it better than i can. I have conducted two interviews with people who have Fibromyalgia, I will link to them at the end of the post.

What is Fibromyalgia (FM)?

 (this text taken from here (as are the “differences” and “similarities” sections below))

FM is a malfunction of the central nervous system that causes disordered pain processing, and results in pain amplification. The main symptoms of FM include:

  • Widespread Pain
  • Fatigue
  • Sleep Disorders

Other symptoms that may occur include:

  • Chest Pain
  • Persistent Headaches, Migraines
  • T.M.J. (temporomandibular joint syndrome)
  • Mitral Valve Prolapse
  • I.B.S. (irritable bowel syndrome)
  • Vision Problems
  • Urinary Problems
  • Acid Reflux
  • Allergies
  • Dizziness
  • Numbness and Tingling
  • Sensitivity to cold or heat
  • Depression
  • R.L.S. (restless legs syndrome)
  • Chemical or Environmental Sensitivities
  • Impaired Balance or Coordination
  • Problems with Memory, Concentration and Cognitive Functioning

Are ME/CFS and FM basically the same illness?

After some internet research, the consensus seems to be that NO they are not the same illness, but that there are people who exhibit both sets of symptoms.  And there may be many connections between them. The similarities are:

  • Reduced Cerebral Blood Flow to the Cortex and Midbrain
  • HPA (hypothalamic pituitary axis) Suppression
  • Reduced Levels of Serotonin
  • Non-restorative Sleep
  • Reduced Levels of Growth Hormone
  • Evidence of a Genetic Component

I recently read online about research/theories of Central Sensitivity Syndromes (CSS). These are a collection of conditions which are linked by problems with the Central Nervous System and this leads to what they call “central sensitization”. The conditions which are considered under this umbrella are Fibromyalgia and Chronic Fatigue Syndrome, among many others which we will recognise and often suffer from in tandem, such as Irritable Bowel Syndrome, Temporomandibular Disorders, Tension Headaches, Multiple Chemical Sensitivity, and several others. I find this interesting and heartening that people are looking not only at biological/neurological factors for these illnesses but also the links between them. What continually frustrates me is when i get something new and it is treated in complete isolation to my existing conditions, when, to me it seems obvious there are connections to be made, not only in understanding them, but also potential in treating them. Click here to read the articles I refer to, start on page 12).

Talking about CSS may see a bit of an aside, but i think it is a new way to look at our illnesses and the links between them. It may lead to more effective pain management and treatment for people who have several of these painful conditions, rather than treating each one as a separate entity, with a drug/treatment for each. I have read concerns from people with ME/CFS that the pain then becomes the focus and the one thing treated and the rest of the illness will be ignored. I understand this, but I have found my symptoms of pain and discomfort to be ignored and they have gone unmanaged for so long, whilst getting steadily worse. I have found that sometimes for long periods my pain has taken over my life and prevented management of other problems, such as sleep, pacing, relaxation and so on. It needs to be looked at for those of us who have pain. I don’t think it is an either/or. I also read (somewhere) that the immune system has a role in Central Sensitization, so it may not be as unrelated to other non-pain symptoms as it first appears…

So, what are the differences between them?

  • FM is identified by 18 distinct tender points (designated points on the body that are painful when pressure is applied), while CFS/ME is distinguished by post-exertional malaise (deep fatigue and exhaustion following physical exertion, which lasts more than 24 hours).
  • Substance P (a neurotransmitter that sends pain signals) is elevated in FM but not in CFS/ME
  • RNaseL (a cellular antiviral enzyme) is frequently elevated in CFS/ME but not in FM
  • CFS/ME is often triggered by an infectious or flu-like illness, while FM is usually triggered by a severe physical or emotional trauma (for example, injury, illness, surgery, prolonged stress)

Exercise: One major difference (from ME/CFS) I have found when reading about FM is that exercise is recommended and is helpful in pain management and taking in some control over pain symptoms. I have recently read “Fibromyalgia: Simple Relief  Through Movement” by Stacie L. Bigelow (2000, John Wiley & Sons, Inc) as I was looking to find some simple stretches that are designed in a way that I could do them, and which might help me to manage some of my pain and muscular tension. She explains the thing I had heard about FM before; that it is a sleep disorder. In my recent internet searches I have not found it referred to in that way so much, and I wonder if it is an outdated view to characterise sleep problems as the root cause of the condition, rather than the Central Nervous System (I don’t know, I am speculating). However, from what she says, it does seem that much of the pain is caused by the lack of restorative sleep; that people with FM do not get into a certain phase of sleep which is when the body heals itself and repairs damage to tissue. She explains that when we use our muscles, they are damaged and this is the normal process which leads to strengthening: We use a muscle and when it repairs itself it prepares itself for being used again by repairing itself stronger than it was before, which is how we build muscle mass and strength. In FM the sleep is disturbed, and is not sufficient to repair the muscles as quickly as someone without FM, leading to greater pain after activity and often an avoidance of further activity, leading the muscles to seize up. A cycle of pain develops.

Even though i do not have an FM diagnosis, I think that some of these processes are going on for me. I got very motivated to do movement and activity when I read the book, and even started to entertain the idea of actual exercise! Then I remembered which body I was in and that I have ME and POTS, not FM, and it was just not going to be possible to take it that far. But I do think moving as much as we can within our limits has to be good. I sometimes think my weak bladder and the fact that I live in a house with stairs (though we do have a downstairs toilet, thankfully!) must be keeping me in a better state than if I was just sitting/lying completely still all day, rather than getting up fairly often to go to the toilet. It is not much, but it is something. I wonder how people who have both FM and ME/CFS manage to balance the pain and the pacing, it must be harder to decide when to move and when to rest when you have both.

Interestingly I have recently been taking a new night-time medication and the result is much better sleep and my muscular pain is much, much better. I really did not think my sleep was that bad (I was certainly getting enough hours) but it seems it was not good quality, despite all my efforts of sleep hygiene etc. I will certainly be paying much more attention to this link in future and talking to doctors if this medication ceases to work for sleep in future.

Two people I know with Fibromyalgia have kindly answered my interview questions, click here to see their answers.

Here are some websites to find out more about Fibromyalgia: (please feel free to add any others you know about/like in the comments section, thanks!)

http://fmcfsme.com/index.php

http://www.fmaware.org/site/PageServer?pagename=fibromyalgia 

http://cfidsselfhelp.org/library/about-fibromyalgia

http://www.ukfibromyalgia.com/

http://www.emotionalprocessing.org.uk/ (not specific to FM but may be of interest)

GIVEAWAY!!

If you would like my copy of Fibromyalgia: Simple Relief Through Movement, as mentioned above please leave a comment below and I will pick the winner at random (i may even use a hat!) at the end of May and contact you to arrange to post it to you. Please check back here at start of June to see who is the winner, just in case i cannot get your email from your comment!

I have found that the book is not really suitable for me as someone with the severity of ME that i have, but i will be copying the gentle stretches before i pass it on, as they do look possible. If you have FM and can manage your sleep to enable you to gradually tolerate more activity in your life, it is a motivating and sensible book written by someone with FM.

To read what other’s are blogging about for International ME/CFS/FM Awareness DAy 2010 click here!

ME/CFS Awareness

ME/CFS Awareness

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