Ron Robson

ASPECTS OF FIBROMYALGIA

by Margaret Robson

The talk was about the different aspects that are associated with Fibromyalgia.  Some of them are accepted as part of the condition but others have not been accepted but do appear quite frequently in those diagnosed with Fibromyalgia.  As we are all different, even though we all have the main symptoms, some of us will have some of the different aspects whilst others may not, and again, we will often have different ones to the person sitting next to us.

One of the problems with Fibromyalgia is the fact that it is not understood properly and therefore these other symptoms are often not connected to Fibro.  This means that we often get really worried when yet another symptom appears.  The one thing I always say, and I repeat it here, is that when a new symptom does appear you must still get it checked out with your Dr.  However, if that doesn’t work out, it is always helpful to know that these symptoms could all be just down to Fibro.  It can take away a lot of the worry and stress when encountering these additional symptoms.

One of the things we are going to be mentioning are trigger points.  Trigger points are not the same as Tenderpoints.  You all know what Tenderpoints are because those are the points that were pressed when you got your diagnosis and you hit the roof!  To understand Trigger points I first have to mention Myofascia.  The Myofascia is the thin almost translucent film that wraps around the muscle tissue.  To better understand it, it’s the sticky white film you see covering some of the chicken parts you buy.  It gives shape to and supports all of your body’s musculature.  Picture a gauzelike network that shapes your entire body.  Make that network three dimensional, covering your entire interior, and then fill the gauze with structures including blood vessels, nerves and lymph.  Put your organs into this image.  They are held in place with fascial scaffolding.  Then you will add your muscles, which are permeated with their own myofascial network.  Finally, position your bones to anchor your muscles, and cover it all with skin.  That is still only a part of where your myofascia is.  I don’t want to go any further into that as that is a subject on it’s own, but that is just to give you a little understanding of what the Myofascia is.

The cause of Trigger Points is thought to appear to involve serious disturbances of nerve endings. This is only a snap-shot explanation and it is much more involved than this but, again it is a subject in itself and is, hopefully sufficient to understand more about them. Trigger Points are extremely sore points that can occur in the Myofascia, as taut, ropy bands throughout the body.  They can also be felt as painful lumps or nodules.  When you have a Trigger Point in your muscle, it causes pain at the end of your range of motion when you attempt to stretch that muscle.  The Trigger Point weakens that muscle.  You begin to avoid using that muscle because it hurts when you do.  Your muscles are designed to work their best when they move freely, so as you move the Trigger Point laden muscle less frequently, it becomes less healthy.  Circulation in your smallest capillaries, the microcirculation, becomes impaired in the area of the Trigger Point.  Nutrients and oxygen cannot reach the area easily, and wastes cannot easily be removed.  Your lymph system depends on the movement of the muscles to move the lymph fluid, so that system begins to stagnate as well.  Finally, because some of your other muscles have to do the work of the muscle that is weak, these overworked muscles start to develop Trigger Points.  Trigger Points can occur in the myofascia, skin, ligaments and tendons, bone lining, and other tissues.  This is just an overview to help you understand how some of the other symptoms occur.  Repetitive motion is one of the most common perpetuators of Trigger Points.  That is obviously why we find any repetitive movement so difficult.  Try cleaning a window, or polishing a table, or even just moving your leg up and down repetitively.  The pain just gets worse and worse until your arm or leg just gives in and you are left with that awful residual pain that just goes on and on.  All you can do is just hold it tight and scream if you are able to, and also use a few choice words, if that is what you prefer!  It is an agonising pain.  When I was diagnosed, I was told that even walking was repetitive, which actually makes sense.  So if I wanted to walk I would have to take a few steps and then do something different before carrying on walking.  So if you see someone acting rather strangely when you go into town, that person may not be drunk or waiting for those men in white coats, it could be me, doing a few ‘exercises’ between steps!

Well, we all have the pain and fatigue, of course, and the only explanation that has been brought forward for the pain, is that it is caused by an abnormality of the Central Nervous System, and they say that our first big flare-up is triggered by either a physical or a mental trauma, or sometimes it is brought on by a virus.    No-one else can feel our pain and it is not easy to describe our pain to others.  There are many different types of pain that we experience as I’m sure you all know, and these include:

1.   A general aching all over, most of the time. Can be helped by having warm baths or lying on a heat pad.

2.   Short, sharp pains in various muscles, with no warning, at various times during the day, even when immobile. These can have the effect of making us drop something, or making us stumble. The brevity of such pains, and the fact that it is not known when they will occur, makes it difficult to obtain any relief

3.   Dull, longer lasting pains in a part of the body. Can last anything from a few minutes to many hours. These occur without warning, and also in any muscle of the body.

4.      Sharp pains in muscles when in use. i.e. reaching for something, holding something, walking, stretching, flexing, carrying something, turning over (for instance, in bed), climbing stairs (up or down), writing, and any repetitive movement. Again, because of the brevity of the pain it is difficult to obtain relief.

5.        All-over pain caused by walking too far, standing too long, or sitting too long. Can be helped by warm bath, and heat pads.  One of the problems with this is that we don’t know what ‘too far’ is, as it changes each day, and when we’ve walked it we still have to get back.  That, if we manage it is real agony.

6.      Pain from being touched, or when brushing against something, or when leaning on something, at various points in the body.  I know from talking to all of you at one time or another that this is a difficult one, and also something that we often discover well before we get diagnosed.  People shake your hand and you can’t understand why it hurts so much.  Or someone will give you a hug and you want to scream with the pain.  Just a tap on the arm or leg is enough to make us hit the roof.  This aspect of pain can be so isolating because people don’t understand why they have to stand clear of you. 

Wearing heavy clothes can be a problem as you sometimes feel you cannot bear anything next to the skin.

I’m not going to linger on the pain aspect.  Suffice it to say that it is not really very well understood, even by us and we have it!

Fatigue is the second symptom high on the list of a Fibro.  In one study over 75% of FMS patients reported experiencing substantial fatigue.  It is not easy for others to understand what this means.  To most people fatigue just means they are tired after doing something that has involved hard work either physical or mental.  But to a Fibro, as you know only too well, it is a feeling that someone has pulled the plug out of your body and all your energy has suddenly seeped out.  It doesn’t happen because you have been doing something energetic (we should be so lucky), but it just happens.  It can happen when you are just sitting still reading and suddenly the book is too heavy and you find it is all you can do to put the book down and lie down.  It can happen when you are out and you just have to throw yourself into a taxi and get home as quickly as possible.  The feeling you are left with is zombie-like, in that you do not have the energy to think or move.  This sort of fatigue that we have so often is in addition to the tiredness that affects us all.

There are many possible causes for fatigue.  One cause is the lack of adequate, restorative sleep.  Once the factors are changed to allow you to wake up feeling refreshed, fatigue often diminishes greatly.  Paradoxical breathing is another common cause of fatigue.  People with FMS are often oxygen starved.  Proper deep ‘belly’ breathing must be restored, with the belly expanding with the inhale and contracting on the exhale (those of you who were here when Cecile Kiener, the Osteopath spoke at our March meeting last year, will remember that she spoke to us about the problems we have with the way we breathe and she showed us the correct way to breathe).  Trigger Points in the respiratory muscles and accessory muscles may be responsible for this.  Lack of oxygen may also be caused by allergy, fluid retention, or microcirculation difficulties.  You may also have chemical toxins and wastes that exhaust your body’s ability to process them, and your body uses up a lot of energy in this process.  Fatigue can also stem from the constant effort to function in spite of your pain.  The pain caused by the Trigger Points of Chronic Myofascial Pain takes a lot of energy.  Some of your fatigue may be due to your body’s lack of usable fuel in the form of adenosine triphosphate.  Some of this lack may be due to problems in your bowel function, including difficulties in absorption.  These are just some of the reasons that can cause fatigue and, of course, they are not exhaustive.

Sleep is a big problem for Fibros.  The first obvious cause is that we are in pain.  How can we possibly sleep when our bodies scream with pain with every move we make.  Just turning over can be agony.  We are told that we lack the Stage 4 sleep. That is the very deep sleep we should go into as the last stage of sleep and this stage should occur within the first three hours of sleep.  If we don’t get this stage 4 sleep it makes you really tired the next day.  Don’t we know it!!  There can be many reasons for not going into the stage 4 sleep, and we are told they can include such things as the bed not being right for us.  Too hard is bad, but then so is too soft.  So we need something in between.  Some people have found the memory pillows and mattresses help.  I have one of the pillows and I find it very helpful.  Alcohol and sleeping pills are also thought to be culprits for not allowing us to go into the deep sleep we need.  Snoring also can be a problem as this can wake you up.  I find that the tiniest sound and the minutest sliver of light in the bedroom, will keep me awake.  To counteract this I use foam ear plugs and an eye mask.  The latter can be the ones used in aeroplanes.

One of the problems caused by the lack of sleep is that we then are less alert during the day.  This means that we can lack concentration and we don’t react as quickly as we feel we should.

I have copies of a very good article on sleep if anyone would like a copy.

How many of you have problems with memory and understanding?  It is sometimes called Fibrofog.  Most people have experienced the problem of walking into a room and forgetting what they are doing there, but we seem to go to the extremes.  There are things that I do regularly, then one day I look at it and cannot remember how to do it.  Silly little things such as using the microwave, or turning the door key.  I just stand and stare at the item hoping for inspiration.  Another problem with Fibrofog is not being able to find the right word.  I end up trying to describe it.  Very frustrating for me and the person I’m trying to converse with.  I want this poster laminated, becomes, you know the clear stuff that you can put over a poster by putting it through a machine – what’s it called?  Or if I want something stapled together, it’s, you know those clip things that are silver and they keep the pieces of paper together, and you press the machine and they come out!  Sounds silly now, but it does really happen – ask Ron!  Another Fibrofog thing is saying the wrong thing in a sentence.  When Jean, John, Ron and I had a meeting with Derek Wyatt MP, I was talking to Derek and wondered why everyone was staring at me as though I’d gone mad.  Well, it turned out I’d said something really silly, but my brain had been saying one thing and my mouth had said something entirely different.  It all makes life very difficult for Fibros as we have to try to really concentrate on everything we do so as not to embarrass ourselves.  This, in itself, can be very tiring.  Some of the reasons given for Fibrofog are, extreme stress, depression, lack of sleep, or an approaching flare-up.  There is a study that suggests that daytime sleepiness causing fatigue, coupled with the distracting effects of persistent pain, contribute to impaired mental function in Fibromyalgia.

Probably the next most obvious symptom for us Fibros is the Irritable Bowel, and with some Fibros it is also Irritable Bladder.   There can, of course be many reasons for these happening as we also know that these symptoms are not just restricted to us Fibros.  However, one explanation for these occurring in people with FMS is that it can be due to the pyramidalis, multifidi, and abdominal Trigger Points.  The pyramidalis Trigger Point is found in your lower abdomen, a little to the side of your midline.  It is at about the same height as the lower hipbone ridge.  Trigger Points in the upper rim of the pubis appear to add to the irritability and spasms of the genital urinary tract.  This may be part of the reason why so many of us go to the loo so often.  With FMS not only is the bladder hypersensitive, it may not hold as much.  There are specific Trigger points that may cause or intensify diarrhoea, nausea, vomiting, and food intolerance.  If you experience nausea, it could be caused by the Trigger Points in the deep paraspinal muscles.  Irritable Bowel is a subject all on its own and I hope, at a later date to bring in an expert on this condition to speak to us.  I do have a very good article on Irritable bowel that you may like to have.  Copies are available after the meeting.

At least 50% of people with Fibromyalgia have headaches, and some also get migraine.  There are many possible causes of headaches, as you can imagine, and if you are prone to these, sensitivity to noise, heat and light can add to our headache woes.  Allergies, fatigue, hormonal imbalance, reactive hypoglycemia, congestion, vasometer rhinitis, and neurotransmitter dysregulation can also be factors. Most ‘tension-type headaches’ are caused by Trigger Points.  Many upper body Trigger Points may contribute to headaches.  Head and neck pain may also be referred from the nasal and sinus cavities and from the teeth as well.  Posterior cervical Trigger Points may entrap the occipital nerve.  This can cause numbness, or a tingling, burning pain in a band around your head.  Other posterior cervical Trigger Points can refer pain to the back of your neck down to the shoulder blade, and in the back of the skull on the side with the Trigger Points.  If you read or work with your neck bent over for a long time this can aggravate the Trigger Points.  I do have copies of an article on Headaches and Fibromyalgia, and some of you may be interested in having a copy later.  Many migraines are also caused by myofascial Trigger Points.  A number of these Trigger Points are all possible migraine-inducers.  Some of the other symptoms mentioned in the article are double vision, blurry vision, and/or changing vision.

Allergies and sensitivities seem to be another of those symptoms that those with FMS have.  Interestingly, Histamine is a neurotransmitter.  Often people with FMS don’t react normally to skin tests due to their altered biochemical responses.  Often many of our “allergies” are actually sensitivities without an immune component or they have a mechanism that does not utilize Immuglobin E, the typical allergy marker. 

Are you sensitive to light?  In FMS, some part of this sensitivity may be caused by a connection between light sensitivity and the hypothalamus.  A lot of people with FMS have difficulty driving at night.  The lights of oncoming cars cause us a lot of  problems.  It is thought this could be due to altered reactivity of the eye’s pupils.  This is under neurotransmitter control.  As may be expected, it is suggested that beta carotene may help.  The problem with light sensitivity is that light can feel like a pain to us.  I use an eye pillow at night to help cut out any light to enable me to go to sleep.  I can even ‘feel’ a light when my eyes are closed, and I’m sure some of you can empathise with this.

Are you sensitive to noise?  I definitely am, as Ron will testify.  I am always telling him not to shout when he thinks he isn’t.  I can also hear things that he cannot hear.  To me, as to a large number of Fibros, noise is also felt like a pain. 

Do any of you have sensitivities to certain smells?  Again, allergies and sensitivities is a subject all of its own and we hope, again, at a later stage to bring in an expert to speak about that.

Another symptom that seems to be associated with Fibromyalgia, and I’ve lost count of the number of people I’ve spoken to who have had this problem, is unexplained toothache.  I mentioned this at a meeting a long while ago and I said that I had had quite a number of teeth out because of the pain I felt they were causing.  The Dentist I had at the time, after I had pleaded with him to take the offending tooth out, bless him, took great pleasure in holding up the tooth after I had suffered agonies with the extraction, and said, ‘look, there is nothing wrong with the tooth’.  Numbness stopped me from saying what I really thought!  However, I really didn’t care because I was just glad to get rid of it.  After many extractions, I finally found some relief, but strangely, I do still feel I have toothache and when I put my tongue up to where it is, I find that the painful tooth is actually a false one!  Again, this pain could be caused by Trigger Points.  These being the digastric, masseter, and temporalis.  Again I have a really good article explaining this in more detail, and is entitled, “What Your Dentist Should Know about Fibromyalgia and Chronic Myofascial pain Syndrome.

Eyes are another problem for us Fibros.  We can get eye pain, double, blurry or changing vision, dry eyes, red and/or teary eyes, and problems with reading when words just seem to jump off the page at us.  Again, Trigger Points can be the problem here, particularly with the eye pain, the red teary eyes, blurry vision, double vision and changing vision.

Once again, I have an article here that is Information for Eye Care Professionals, and this is very helpful in explaining why you have these symptoms.  I’ll read it to you:

Ear Pain is something else we seem to get.  This again can be caused by Trigger Points that refer the pain.  The referred pain may include the area behind the jaw and in front of your ear, and/or the floor of your nose and throat.  You may get increased pain when you try to open your mouth wide, when you chew food or when you clench your teeth.

I think we all know about bumping into doors or walls, knocking things over, and dropping things.  The sternocleidomastoid group of muscles could be part of the problem.  I think we learn to have a sense of humour about our condition as we go through life, tripping up, cleaning up, and putting plasters on the places that we’ve hurt.  Well, that is, if you are not allergic to plasters, as I am.  Very strange but even the non-allergenic plasters leave me with a rash, but then, so did the non-allergenic pads I used with a TENS Machine!  The sternocleidomastoid Trigger Points can also cause dizziness.  One of the problems I often encounter is in shopping centres.  I’m walking along and suddenly my eye catches something in a shop window.  So, of course, I look back to check out what I’ve seen, and that’s where my stick becomes a lifeline as I’d be on the floor without it, as everything is out of kilter and it takes a few minutes for it all to return to normal before I can continue. The sternocleidomastoid Trigger Points can also cause imbalance, neck soreness, a swollen glands feeling, runny nose, maxillary sinus congestion, tension headaches, eye problems, spatial disorientation, postural dizziness, vertigo,    sudden   falls      when        bending, unintentional veering whilst walking, staggered walk, impaired sleep, nerve entrapment, and disturbed weight perception.  Well, I can do without that Trigger Point!

Do you have itchy skin? Do you sometimes feel as though something is crawling over your skin and you want to brush it off?  I’ve done this more times than I can remember.  It really does feel just like a creepy crawly has just run across your skin.  I find it is more often on my face.  Again, this can be caused by Trigger Points.

How do your feet feel when you first get up in the morning?  Do they feel as though they belong to someone else?   Do they feel like lumps of lead that are too heavy to lift up?  Or do they sometimes feel as though they are burning?  This seems to be quite common among Fibros.  If you are like me you dread getting out of bed because you know exactly what to expect and you know it won’t be pleasant.  It will hurt and you will feel off-balance, probably walking into the door jamb or door, or banging into cupboards or wardrobes.  I usually use the bed to hold onto as I make my way around the room.  How I eventually do end up in the bathroom sometimes seems like some sort of minor miracle.  Does this sound familiar to anyone?

Keeping on the subject of getting up, do you dread it every morning?  First, and most important, you have to move.  That’s bad enough.  The pain is excruciating, so you lie there a bit longer until you think you can bear the pain.  So you begin to move, but then you have to push back the bedcovers.  You’d think a duvet would be light, and to anyone else it probably is, but to us it seems so heavy.  Having managed that we feel so exhausted we’d now like to sink back into the bed and forget getting up, but if we do that we know we have to get up at some point and we have got this far, so being the determined people we are, we decide to move forward.  The effort of getting out of bed is enormous and then to be confronted with those two lumps of lead on the end of our legs is just too much.  However, we are stoic, so we manage to do it.  Do you ever read stories where the hero or heroine leaps out of bed?  Can you just imagine it?  I doubt any of us can.  Of course our problems don’t end with getting out of bed.  There’s still washing, cleaning our teeth, and worse of all, getting dressed.  Do you ever wish you could just stay in one set of clothes forever?  No more lifting arms to put them into sleeves, no more bending to put shoes or socks or tights on.  Bliss!!

Problems with writing i.e. writers cramp, and having a weak grip when objects fall out of your hands are most often caused by Brachioradialis Trigger Points.  You will all know the pain when you write for too long.  Too long not being very long at all for us Fibros.  One of the problems is that lingering pain that goes on and on long after you’ve finished writing, and it progresses from the hand to the wrist, then up the arm to the shoulder, neck and down the back.  We are also well known for dropping things.  Milk or orange squash are the worst things.  It’s not only painful, but so frustrating, especially when you know that you have to clean up afterwards.

How about those awful cramps that you get?  Especially in your lower leg and feet. To stop this happening, I’ve just read in a book ‘do not point your toes like a ballerina while you are asleep’.  Well, yes, I always know what I’m doing when I’m asleep!  Muscle cramps and twitches elsewhere seem to be quite common with Fibros too.

Trigger Points are also one of the problems with Buckling Knee.  Why does it always happen when I’m going upstairs?  One minute I’m upright and the next I’m sprawled out on the stairs.  We’re so used to it now that Ron calls out, ‘are you all right’ and I just say, ‘yes, just my knee again’.

Another problem I find really frustrating is the feeling that my fingers and hands are swollen, yet when I look at them, they aren’t.  This results in what we call ‘fumbly fingers’.  I am at my worst when I’m at the Automatic Teller and there is a queue behind me.  I just cannot grasp my card and then cannot do it as quickly as the people behind me would like, as my finger just get in the way.  Ron wants to do it all for me, but nowadays I just take my time, and people just have to wait. 

Well, there are many other aspects of Fibromyalgia, but I could go on all day, so I think I had better end here.

Please remember, though, that if it is a new symptom to you, you must get it checked out with a Dr first.  If it cannot be put down to anything else you may feel relieved that other Fibros have the same symptoms.  It’s always good to know you’re not alone. 

Don’t forget we have articles about some of the things I’ve mentioned, and the books in our Library (available to members) are also helpful.

3. DVD ORDER FORM:

DVD

Order Form

For

FIBROMYALGIA  CONFERENCE PRESENTATIONS

BY PROFESSOR ERNEST CHOY & MARGARET ROBSON

In October 2010, the ICATS team from Eastern & Coastal NHS ran a Conference for Doctors and Healthcare Professionals at the Ashford International Hotel in Kent on “The Advances in Chronic Pain Management”.

The main speaker of the day was Professor Choy who gave an excellent presentation on the “Recent advances in the understanding and treatment of Fibromyalgia”. 

This was followed by a presentation by Margaret Robson, the Co-ordinator of the Fibromyalgia Support Group (Medway) and Regional Co-ordinator for Kent for FMA UK, about the “Effects of Fibromyalgia - a Patients’ Perspective”.

A DVD of these presentations has been compiled and is now available to purchase.

Those with Fibromyalgia and their carers/supporters, who have previewed the talks, have found that it is an excellent tool for explaining, to people around them, the symptoms, and the way in which they impact on the sufferers’ life and lifestyle.  The talk by Margaret Robson is particularly helpful as Margaret has Fibromyalgia and is able to ‘tell it as it is’.  If you have difficulty explaining to family and friends how you feel, then this DVD is for you.

For copies of this DVD, please send a cheque for £4  for each DVD, made payable to Fibromyalgia Support Group (Medway), together with the completed form below, to:

Margaret Robson,  Fibromyalgia Support Group (Medway), 16, Barberry Avenue, Chatham, Kent, ME5 9TE

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I would like copies of the Conference DVD and enclose a cheque for £4 for each copy, made payable to Fibromyalgia Support Group (Medway)

Name ………………………………………………..

Address ………………………………………………………………………………

Tel: …………………………        No. of copies required …………………………

 4. LINK TO INTERNATIONAL CONFERENCE PRESENTATIONS ON FIBRO BY LEADING USA MEDICAL PRACTITIONERS (BELOW):

http://www.screencast.com/users/OFFERUtah/folders/2010%20Conference%20Videos/media/a7ea23e9-735f-4464-b257-5dec63348a26