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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.

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 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!

These are interviews I did (by email) with two friends with FM as part of my blog for ME/CFS/FM Awareness Day 2010. They are in their own words. To read the main post, click here.

Interview One – Maggie:

I’m a 54 year old woman, divorced with two grown up sons.

How long have you had FM? How does it affect you now, what are your main symptoms and has it changed over time?

I’ve had fibromyalgia for almost 12 years. Since coming to live in Spain 5 years ago my condition has been a lot less of a burden. Largely as a result of the climate –sun and warmth make an enormous difference, which in turn means I am able to walk and move about more easily on a regular consistent basis and am therefore less stiff. In addition the pace of my life here is much slower, the general rhythm of the day is more relaxed. I also live on the coast which means I don’t have to deal on a day to day basis with hilly terrain, and living in a small flat cuts out the need for using stairs many times in a day, and is also a more manageable space re housework, cleaning etc.

The symptoms are many and variable – ongoing pain in some part of my body – somedays, knees, and hands other times neck and shoulders, sometimes one side of the body another day the other. The worst is the sense of fatigue that comes on very suddenly, and unexpectedly, often a result of overdoing things or as a direct result of stress and anxiety – even re minor things eg if washing machine breaks my stress levels are completely out of proportion with the incident  and any anxiety affects my body and its capability profoundly. I am certainly not as ill as I was 5 years ago but that is because I have drastically changed my lifestyle – when I return to cold weather or stressful situations my symptoms are exacerbated. It’s also hard to know how much the symptoms have changed because over time living with pain – I have learned to shut out sensations of pain, if I didn’t do that my life would be miserable.

What was happening at the time you became ill? Do you have a theory about what caused it/triggered it for you?

The onset of illness was very sudden and acute. However I was overworking and caught a virus which caused inflammatory arthritis in all joints of my body – I was confined to bed for many months unable to walk, move etc the doctors told me that the fibromyalgia was a direct result of the continued acute pain suffered during the course of this illness . So in my opinion the overworking/ stressed lifestyle lowered my bodily resistance making me victim to a nasty virus – I agree with the doctors that the virus caused arthritis and fibromyalgia set in as my body was unable to deal with the ongoing pain.

What changes have you made to your life to accommodate it?

I have completely revolutionized all aspects of my life. I have had to change not only the things I do and the manner in which I do them but also my attitude to life. I have had to become much more selfish in relation to my life, and much more discerning re what  I do and when I do it – I live alone now as it is easier for me not having to cope with the practical and emotional demands of other people —-I now please myself and am answerable to no-one. I have to work hard at always retaining a positive attitude. I have had to recognize, come to terms with and accept the severe limitations that the condition brings but to be happy within those limitations.

Is there anything that has helped you to cope with it? (Either prescribed medication or something else).

Acupuncture, hydrotherapy, gentle regular non aerobic exercise eg walking cycling swimming. And plenty of rest. Counselling helped me enormously to come to terms with what I couldn’t change and the strength to change what I could. As for prescribed medication eg ant inflammatories, analgesics, sleeping medication – I personally now only resort to taking medication if it is an emergency as the long term toxic effects of ongoing analgesia are in my opinion counterproductive. When in pain I try everything from application of heat or cold, yoga, just lying and resting and waiting….

How do you understand it and how do you describe/explain it to others?

It’s a complex syndrome which affects the nervous system and pain control mechanism of the body, its also a metabolic disorder in that the muscles burn up ATP very fast hence creating the symptom of fatigue.

How closely do you think it is related to ME/CFS, if you are familiar with what that condition involves? What do you see as distinct/different?

I think there is a definite relation between these types of disorder not so much in the symptomology as in the cause.

What other diagnosis/conditions do you have alongside FM? Do you think they are related to each other?

I think I answered this re having low resistance  virus arthritis = ongoing pain = fibromyalgia develops as a result.

When and how were you diagnosed? Did you know what FM was before that? Did you have to fight to be diagnosed or was it straightforward? Did you match all the tender points? Do you think these are a good indicator of having FM?

 I was diagnosed more than a year after I became ill. I had never heard of the condition before. I think I was lucky that one day I had the fortune to be seen by a hospital doctor who knew about the condition – once the diagnosis was made – I could then understand what my body was going through. Yes I do match all the tender points – and yes I think they are evidently a good indicator of FM

Are there any good web sites/other resources that you would recommend to people wanting to know more about FM?

In the early stages of the illness I found the British Fibromyalgia web site very helpful and their printed information and leaflets were invaluable in helping family and friends  understand what you were going through. I would say find as much info as you can – learn to undersatand the mechanics of the illness and accept that life cannot continue being the same you have to change irrevocably and only you can determine whether that change is a positive one or a negative one.

Is there anything else you would like to say about life with FM?

You have it. There’s no cure. Learn to live with it. Do everything you can to be as comfortable and happy as you can whenever and as often as you can. Don’t let it defeat you psychologically and spiritually.

Interview Two – Jo:

How long have you had FM? How does it affect you now, what are your main symptoms and has it changed over time?

I think I’ve had FM for a very long time. Sometime in my twenties I realised that everywhere on my body hurt if I pressed it. In my late twenties I started to get muscular pain after small exertion. I was always at the doctor’s or the osteopath. But even earlier, in my teens I can remember being in agony after exercise and wondered why everyone else didn’t seem to be as affected. I put it down to not being very fit.

Now, my main symptoms are fatigue, muscular stiffness, joint stiffness and pain in the most used areas – across my shoulders and lower back. If I get into a good place with my energy levels and do too much I can be in a great deal of pain with my whole skeleton feeling like it is lit up. Thankfully that doesn’t happen too often.

What was happening at the time you became ill? Do you have a theory about what caused it/triggered it for you?

For me, stress seems to be the trigger. I have always been very stressed and have had emotional difficulties all my life. I store tension in my body and have problems releasing emotion.  If I have massage or other body therapies it can be upsetting for me as memories and emotion can be released that way.

What changes have you made to your life to accommodate it?

Well, the fibro on its own wasn’t too bad for functioning. I had to be careful about sitting at a computer for long periods of time, spent a lot of money on osteopaths and massage, tried to make sure I kept supple through swimming and pilates and so on. It was when the fatigue really kicked in that the problems started. I had to give up work. Everything changed.

Is there anything that has helped you to cope with it? (Either prescribed medication or something else).

I used to drink alcohol which is a great muscle relaxant, but that has its own problems. At one point I used to get strong, codeine based painkillers from the doctor, and developed a bit of a habit. Not a good way to carry on.  Once I had a diagnosis it became easier and I stopped self-medicating. Now I take low-dose amitriptyline and low dose SSRI antidepressant. The two together really help pain and sleep. Paracetamol is good for bad days and can help stop me building up into a pain crisis. Prevention is much better than cure and I’m much better when I do my Pilates stretches in the morning.  I also regularly do a body scan meditation for relaxation, and I rest three times a day for at least half an hour.

How do you understand it and how do you describe/explain it to others?

I don’t generally explain the pain. I’m more usually trying to explain my fatigue and walking difficulties as they are much more visible. Sometimes my partner asks me if I’m ok and I just mutter ‘in pain’. It’s so familiar to me that I accept it like breathing. It’s just part of me. I understand it as a holding on of tension, my body’s complaint against having to do the work of my faulty emotional processing.

How closely do you think it is related to ME/CFS, if you are familiar with what that condition involves? What do you see as distinct/different?

I think they are one and the same; all part of the same continuum. The FM is, for me, at the sharp end of the wedge. It belongs more to the earlier onset of my ME/CFS. The fatigue, or thick end of the wedge is where my body has been holding this tension for so long it is having to stop. I know when I’m improving because I get less fatigue and more pain.

What other diagnosis/conditions do you have alongside FM? Do you think they are related to each other?

Hmm, let’s see. Irritable Bowel Syndrome, Osteoarthritis, Post-Traumatic Stress Disorder, Depression, Anxiety, Generalised Anxiety Disorder.  I feel they all stem from the same cause which is extreme and repeated stress.

When and how were you diagnosed? Did you know what FM was before that? Did you have to fight to be diagnosed or was it straightforward? Did you match all the tender points? Do you think these are a good indicator of having FM?

I was just on the cusp of moving into the fatigue stage of my illness. I met someone who had just received a diagnosis of fibromyalgia and whose symptoms exactly matched my own. It was a further four years before I could get a GP to even entertain the idea I had FMS. A rheumatologist I saw did not ‘recognise the diagnosis’. After I moved to a new area I asked to be referred to a rheumy I knew was sympathetic. He wouldn’t see me because I had fibromyalgia and they could do nothing for me! I burst into tears in front of my new GP and tried to explain I had diagnosed myself and it was an official diagnosis I wanted. To cut the wait and frustration I paid to go and see the same guy who had refused to see me. Through that meeting I got my diagnosis of FMS/CFS and a referral to an ME clinic. He quickly checked my tender points and said I wasn’t too bad. It wasn’t till I left his office the pain kicked in from just having them pressed. I don’t know if they are a good indicator or not. Probably a better indicator is widespread, long-term pain with a normal rheumatology blood test.

Are there any good web sites/other resources that you would recommend to people wanting to know more about FM?

Actually, there is so much out there, so many different theories and protocols, forums and blogs, for anyone new to this I’d tell them to go with what suits them. This website on emotional processing produced by a team of researchers in Dorset, UK, is my touchstone although it’s not specifically about FMS. http://www.emotionalprocessing.org.uk/index.htm

A useful book is “Fibromyalgia and Muscle Pain” by Leon Chaitow

My feeling is that sustained emotional stress, especially in childhood, results in real physical symptoms and the breakdown of metabolic systems in the body. My experience of it is that some recovery, even total recovery, is possible.

Is there anything else you would like to say about life with FM?

It’s real, it hurts, it can be very disabling, not to mention frightening at times.

I am starting to do some exercises… only very small ones and only when i feel up to it, so not even every day, although i will try. I have been trying to ask people (doctors, physios, alternative therapists) for ages to help me with my upper back pain and to help me strengthen my core muscles in my back in case any weaknesses that have built up there due to my life spent mostly sitting or lying are contributing to my problems, but no-one has been very helpful. I find holding myself up to sit or stand very energy consuming, uncomfortable and difficult and i am sure i am not using certain muscles enough that deal with these postures. Whether this is anything i can do anything about, i don’t know; as my muscles do not behave normally and tire very quickly and therefore cannot be strengthened when tired.

So anyway my mum has been given some physio exercises to build up core strength as she has back problems too. Also i am inspired to try by Rachel M who has gently built up some strength in her arms and shoulders and is now touching her toes!

The first things i am trying to do more often is to touch my toes, and to “hang” forward in this position a while to open up my shoulder blades as well as to stretch the backs of my legs (hamstrings?) as it is quite uncomfortable and i have to bend my knees in order to touch my toes at all. This is due to inactivity and inability to walk far and i don’t see why i cannot improve this very gently.

I also want to do the  yoga “pose of a child” as this also opens up my upper back and i really feel this doing some good in this, my most painful area. It makes my shoulder blades fall upwards (!) which is obviously not a postition they are used to as they feel almost as if they get stuck there and it hurts, so i don’t do it for long! Also my circulation is not good so i cannot stay like this for long and have to get up very carefully. It seems to make my thighs ache afterwards, who knows why.

I am also doing one where i point one elbow at the ceiling and one at the floor and link hands behind my head and stretch, then swap the arms around to do it the same both sides. No picture of that one… it is a bit odd but you may be able to work out what i mean. It is also supposed to stretch the shoulders etc. This is one of my Mum’s physio expercises.

There are lots of other things i would benefit from but i am starting with these…

ME/CFS Awareness

ME/CFS Awareness

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