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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.

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(This is one of several posts i have written for ME Awareness Day – click here to see my main page and link to the other things i have written, and click here to see what everyone else is blogging about!)

I have been mulling over what to write about for ME Awareness Day 2009 for the last few weeks… there are so many issues that i could talk about, personal, political, medical – but in the end i thought i would keep it simple (that was before i started to actually list my symptoms!) and share with people all the symptoms i have experienced in the last few years (I have been ill for over ten years but will focus on the last three years since i left my part-time job when things got worse again. Apart from the initial period of illness, the past three years have been the most consistently severe).

I want to convey the very important message that Chronic Fatigue Syndrome (my official diagnosis) IS NOT JUST FATIGUE!!

(I should mention here that i also have another (additional) diagnosis of “POTS” (Postural Orthostatic Tachycardia Syndrome) which is a collection of symptoms relating to my Autonomic Nervous System not working properly. Apart from the tachycardia and nearly passing out, I cannot really separate the two illnesses or sets of symptoms as they are interrelated and i have no idea which causes what much of the time, never mind if they are actually part of the same condition/illness. Quite a lot of people with CFS/ME also have POTS and most others will have symptoms of autonomic dysfunction to some extent; particularly those who are moderately to severely affected. These can include: Dizziness and lightheadedness, digestive problems, problems with standing and being upright (feeling much better lying down), lack of temperature control, circulation problems and blood pooling in lower limbs, and many more). 

I do not like the name Chronic Fatigue Syndrome (CFS); i think it does minimise the complexity of the illness and lead to many people claiming to have it, or being diagnosed with CFS, who actually do not have it. People can be tired out and run down for many reasons and this can drag on and affect their lives very negatively, and i have every sympathy for them, but it does not mean they have the same illness that i have. Maybe we can all get appropriate treatment once this is sorted out. I won’t get into all the ins and outs of this issue here (the variety of diagnostic criteria used to diagnose and the implications this has on credible research into the condition/or conditions) but i feel it is really worth emphasising the full range of symptoms and bodily systems affected by CFS/ME, many of which perhaps do not get mentioned.

It particularly frustrates me when doctors and other medical professionals (who should know better) say to me, when i am feeling particularly bad at an appointment, and have lost the ability to speak clearly and express myself:

“Yes, I know, you are feeling very tired today”

I suppose they are attempting empathy and trying to make me feel understood, but i just scream inside that they know nothing if they still think of CFS/ME in this way. I do NOT feel tired: i feel physically and severely ILL. I feel that essential bodily functions/systems are shutting down one by one and it is truly frightening to experience my body in this state of crisis.

I often feel i am moaning on too long for people to tolerate if i talk about my symptoms in detail, in fact i often do not focus in on them myself unless they are severe as it is just easier to get through the day by distracting myself from them/ignoring them as much as possible… but here they are in all their glory…

me-symptoms-picture
 
(List of symptoms included at end of post in case you cannot read the image)(To see the image larger, click on it, which will link to Flickr)

 This is just a personal picture,of course, and other people will have a different set of symptoms and will experience my more minor symptoms as major and vice versa. I have found that the symptoms seem to evolve and change over time, some improve, but often others move in and take their place, so it feels that quality of life does not change much overall.

The implications of these symptoms obviously affect every single minute of my life, and everything i (attempt to) do. Everything i do manage to do comes at a high “price” in terms of having chosen it over other things (this often means choosing between things that others would deem as all “essential” tasks to do in a day) as well as in terms of what is officially called “post exertional malaise” or otherwise known as “payback” (if i do something that uses too much energy/exertion i will then have a period of hours/days/weeks where i am operating at a much lower level of functioning and experience many more symptoms, and more severely, than usual) so every little thing needs to be considered as to it’s importance in relation to how strong i am feeling at the time, a wearying decision-making process in itself, and always a gamble…

I have made two more pictures like this, about other aspects of ME: the impact of these symptoms on my ability to function, and the things that people (mostly medical professionals) have said to me about my illness. Click here to read that post too!

Please do not use my image/artwork without asking!
Creative Commons License
This work is licenced under a Creative Commons Licence.

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Symptoms: Vertigo, noise sensitivity, tightness of scalp, sensitivity to light, lack of stamina, nosebleeds, dizziness when standing, sitting, moving, speaking or concentrating, tinnitus, TMJ (Jaw joint) dysfunction, breathlessness, light-headedness, eye muscles slow to react to light/focus, tension headaches, clicking of back, neck and other joints, facial paralysis, dry eyes, constant thirst, aching eyes, blurred vision, mental fatigue, tri-geminal neuralgia, neck, shoulder and upper back pain and tension, painful points on scalp and upper back, hormonal issues, reactive depression, swollen and painful lymph nodes, shivering/goose bumps/spasms when not cold, sensitivity to movement in visual field, tachycardia (POTS), memory and concentration problems, difficulty speaking, pallor, weak bladder, almost fainting, pins and needles/severe itching of legs, shaking, muscular weakness and fatigue, ticks/twitches in muscles, lacking in energy, paralysis on waling, defecation syncopy, IBS, freezing cold feet when body hot, lack of stress tolerance, movements slowed, need to be horizontal and have bed-rest in day, weight gain/loss, post-exertional malaise/payback, disturbed/prolonged sleep, generalised weakness, lack of body temperature regulation, excessive sweating, hot flushes, trembling leg muscles, walking difficulties, sensitive skin – easily irritated and painful to touch, heavy aching thighs.

Well, Happy New Year to everyone reading my blog!

It is about time i posted an update about how things have been going… thing is, i have been so busy! Yes, it is time to be definite about the new the new tablets for POTS… they are doing some good, for sure!

Symptoms improved include:

Firstly and importantly, i  have not had to lie down in a public place, near collapse, due to a POTS “episode” (where my heart is beating very very fast, i am melting with heat radiating from me, feeling very dizzy, weak and ill wondering how i will get home), which is very welcome! I suppose this means my heart is not beating as fast anymore… although it still seems to race sometimes… we will see what the machines say at the hospital when they test me on Friday!

Headaches and muscular tension in upper back, neck, shoulders and head – still there but less pain and headaches less frequent.

Blurred Vision – seems a lot better – amazing what a bit of blood to the eyes can do 😉

Temperature control (less hot flushes and icy feet – although my new sheepskin slippers may also be having an effect there!)

Walking speed (short distances obviously!) and ability/speed to get up from sitting both often better.

Recovery period – i have been recovering more quickly than i would expect from such “big” things.

I am feeling better in myself, especially in the mornings and can usually wait til later for my nap if i need to.

I often have more stamina for talking to people, going out, being online or reading etc.

Things i am not sure if improved yet:

Distance i can walk and time i can stand up for: I have done a bit more of these to test them out but do soon reach my limits… have had a couple of good experiences where i felt it was a lot better but in general it is not a lot better so the jury is out on that… i am not getting to the point of collapse as quickly (see “episodes” above).

Things i have been doing over Christmas and New Year…

Travelled for seven hours door to door to stay with my Mum: this was a trauma and i NEVER want to see a train again, the wheelchair assistance helped (once it arrived) and if i had not missed my connection the journey would have been a bit easier… however, although i rested up, i did not feel as bad in the following days as i expected so i was very happy about that.

I stayed at my Mum’s house for a week and spent time with my sister, her boyfriend, my uncle, grandparents, dad and other people that came around and in general felt ok to chat and join in. It was nice to be so sociable!

I went out for lunch with my uncle, mum and sister.

I went into Marks and Spencer Simply Food (my sister drove me to the door and then took me home!) and i enjoyed browsing all the lovely things in there – i had no idea all the nice things they have!

A friend of mine drove me back home in her VW camper van, then stayed for a couple of nights to see in the New Year with us. The journey was lovely, sunny and frosty and so much more relaxed than the train. The seat in the camper van was really comfy and had arm rests and tilted back so that i could doze as well!

On New Year’s Eve we drove to the coast to a lighthouse and i walked a little way and looked in some rock pools, but saw not one crab! Once i went there years ago and there were hundreds so i was a little disappointed… the seaweed etc was beautiful though. We then went to a pub for lunch on the way home! We were out for 3 hours! I then had a sleep and stayed up til 1am to see in 2009 with card games and shortbread biscuits… needless to say i slept nearly all of new year’s day, but happily enough as there was a good reason for it.

Since then i have walked the dog once, a short distance but it was not too hard. I have been out for a couple of hours in the evening to a social meeting of creative people, AND been back to an M&S food shop 😉

Today my main task is to write this, have a bath and not much else as i don’t want to over do it too much and my headaches have been returning a little… all in all though it was been a really encouraging start to the year and although i still have just about all the POTS symptoms i had before they are less distressing and not as bad as they were. I am hoping when i go back to the hospital on Friday we can build on this good start and that this will not be it, as although it is a huge improvement from where i was before, and i am very grateful, i would like a bit more, please! (call me Oliver!)

I do not expect miracles, but have been operating at such a low level over the last couple of years that it would take several hundred percent’s increase to get back to where i could do certain things with any reliabilty, such as drive places and be able to stay there a while/walk a little then be sure to feel safe driving home, go out in evenings/socialise more often, be able to travel long distances to visit my best friends, be able to go somewhere regularly and reliably like an evening class, be able to wander around a little more to allow me to go into shop or visit museums or events more and to allow me to take photos again which usually involves a bit of wandering/standing to get the best shot – this last one has been very hard this year and i miss it but it would not take much improvement to be sometimes  possible again. I would also like to be able to take the dog out again at midday and not have to employ a dog walker to do it!

The other thing that may be coming back is the ability to do “boom and bust”… i know, i know, this is the thing that we are told never to do as people with ME! BUT the POTS symptoms have meant that i have not been able to take advantage of good days (i have not had much variation in my days – maybe operating more in terms of a good half hour!) to do something big, and to then suffer later. While this is not an ideal way to live, it does give us the option to do something we really want to, or to experience something important to us, even if we have to suffer the consequences, sometimes it is worth it!

So it is all good, and i have hope that this year will be a big improvement on the last. Even if this is a good as it will get, that will be a huge improvement. It is so nice to see the downward spiral of levels of health turn a corner and start to rise again, for the first time in maybe seven or eight years! You can see why i am excited!

The only depressing thing is that while I am getting a diagnosis and treatment, so many people are suffering with these symptoms and not getting any such joy. It is only because i volunteered to take part in a research study that i was diagnosed and got to see the specialist, and only because i live in the city i do that i had access to that option. I knew something was not right, that it was more than my usual ME symptoms and that it was seriously affecting my ability to carry out normal day to day activities in a very specific way. My doctor said “I just think your ME is very bad at the moment…” and would not refer me to anyone, so i took matters into my own hands. I was still shocked when my suspicions of POTS were confirmed but so relieved as well to have it acknowledged. I know of two other people with severe ME who almost definitely have POTS (i am no doctor!) but who have no hope of getting properly tested or treated. It is just another set of symptoms that they are needlessly having to cope with on top of everything else.

The drug i am taking, Midodrine, is not even licenced in the UK, so i think i am just getting it as i am part of the research being done at the hospital. It seems early days in POTS treatment in the UK, i hope things improve soon for everyone else as i have a feeling that there are lots of us out there needing help with this…

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