Fibromyalgia and MPS
Kay has Fibromylagia and Myofascial Pain Syndrome.
It is so difficult to explain Fibro amd MPS, and people often regret asking, so on the advice of others who have this condition, we have put a page on the blog to refer people to.
For those who have come across this page because they are wanting to invite Kay and Steve to come and do some work for them – please don’t worry, these conditions have never stopped Kay doing anything – at all!
This page means Kay can freely give some advice and make comments about how these conditions affect her, followed by some of the official information on the conditions.
But firstly – over to Kay:
I was born with these conditions, but not diagnosed until I was 19. For those who have known me for a while and think I’ve always got something wrong with me…..It is ALWAYS due to the Fibro. (Comments made to me along the lines of “you’re always ill” or “are you still ill” have caused a lot of distress in the past) A few years ago I had chemical allergies – and yes, they were due to the fibro. I have never had anything wrong with me that isn’t connected to the fibro! But I am very thankful that I no longer have the chemical allergy problem!!
Hard work doesn’t make things worse. If I’m told it might be best if I didn’t do something because of my health, it makes me a little cross. If you will excuse my language, I tend to have a rather bloody minded approach to the conditions and I don’t give in to them!
Some days I use crutches, sometimes a walking stick (Using a walking stick doesn’t mean I’m feeling better, it means the crutches are causing more pain than relief!) , and very occasionally I will need to use a wheelchair. On some very rare days you may well see me out and about with nothing! (I love those days!) All these days will intermingle with no logic as to when and why.
Because of other associated disorders that go with these conditions, I have a lot of problems with my eyes. This makes reading painful. I can often see what’s on the page, but it moves around a lot, and to look closely and read really hurts. I will often be wearing a different pair of glasses every time you see me – this is just me trying to keep up with what my eyes are doing on a particular day! If you need to send me paperwork, please send it either by email as an attachement, so my computer can read it to me, or on yellow paper in a sans serif font sized at 14/16.
Some days will be good – some days will be bad. Sometimes there is no reason for the bad days – they just happen! I can have two weeks rest and be really ill at the end, but then do three weeks work at Spring Harvest and be Ok!
However, the things that can affect symptoms are:
·Sitting still for too long/standing for too long
·Walking too far
·Repetitive movements
·Infections, being too hot, being too cold
·Fatigue (But with fatigue and poor sleep being symptoms too – this can be self perpetuating!)
·Extreme stress (And I mean extreme – not normal everyday stress)
Most days I will look very well – everyone with fibro/MPS can look well, but underneath, it still hurts. I smile a lot and look happy….which I generally am, but it doesn’t mean I’m not in pain. Any muscle in the body can be hurting in any combination or level of severity at any time of the day or night.
One of the symptoms is “Fibro fog” (See below). This affects me like dyslexia. I need information – especially numbers given slowly (If you’ve ever heard my mobile answerphone message – now you know why!!) I may forget your name or use one of your relatives names instead, or use the wrong words whilst speaking to you. (Amazingly, I rarely do this when working….God’s grace or what!) Please ignore/translate in your head or just laugh at me – please don’t patronise me by suggesting the right word!
Well meaning people often suggest different treatments and “miracle” cures – and believe me I’ve heard it all before! Please don’t suggest them – researching and trying different things actually uses way too much energy. I have an RSS feed on the web pages and blogs giving the latest sensible research on treatments.
Please don’t tell me God wants to heal me – lots of people have done that and after a while it becomes painful and draining. (Especially when people try to lay hands on me!) I am content with who I am and, and even with these conditions believe that I am God’s beautiful creation. I work daily with God’s grace and power – if and when He wants to heal me, God will tell me Himself! (In fact he’s far more likely to tell me than you!)
Advice for my Friends (If you know others with these conditions, it will probably be different for them)
Hugs are fine….just ask first (Just in case it’s a really bad day) and hug gently
If you’re not into hugs….shake my hand gently!
Feel free to ask how I am, but I can’t guarantee I’ll give you a sensible answer!
Please don’t fuss or over do the sympathy.
My closest friends and supporters use a scale of one to ten to allow me to give a one word answer to how I am – if you really want to know how I am, feel free to ask where I am on the scale (One = good, ten = bad)
The following is from the Fibromyalgia web page:
What is Fibromyalgia?
The primary symptoms of fibromyalgia include widespread musculoskeletal pain, severe fatigue, and disturbed sleep. Fibromyalgia means pain in the muscles, ligaments, and tendons – the soft fibrous tissues in the body.
Most patients with fibromyalgia say that they ache all over. Their muscles may feel like they were pulled or overworked. Sometimes fibromyalgia symptoms include muscle twitches and burning sensations.
To relate to the fibromyalgia symptoms, think back to the last time you had a bad flu. Every muscle in your body shouted out in pain. In addition, you felt devoid of energy as though someone had unplugged your power supply. While the severity of symptoms fluctuates from person to person, fibromyalgia is a little like this
Common symptoms of fibromyalgia – (Kay has all of these symptoms in varying combinations and degrees!)
·Pain - The pain of fibromyalgia has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, and stabbing. Intense burning may also be present. Quite often, the pain and stiffness are worse in the morning and may hurt more in muscle groups that are used repetitively.
·Fatigue - This symptom can be mild in some fibromyalgia patients and yet incapacitating in others. The fatigue has been described as “brain fatigue” in which patients feel totally drained of energy. Many patients depict this situation by saying that they feel as though their arms and legs are tied to concrete blocks, and they have difficulty concentrating, e.g., brain fog.
·Sleep disorder - Most fibromyalgia patients have an associated sleep disorder called the alpha-EEG anomaly. Sufferers appear to spend the night with one foot in sleep and the other one out of it, waking up feeling as though they’ve just been run over by a truck.
·Chronic headaches - Recurrent migraine or tension-type headaches are seen in about 70% of fibromyalgia patients and can pose a major problem in coping for this patient group.
·Temporomandibular Joint Dysfunction Syndrome - This syndrome, sometimes referred to as TMJ or TMD, causes tremendous jaw-related face and head pain in one-quarter of fibromyalgia patients.
·Other common symptoms – eye pain and visual disturbances, chest pain, morning stiffness, cognitive or memory impairment, numbness and tingling sensations, muscle twitching, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, nausea, dizziness, and impaired coordination can occur. Fibromyalgia patients are often sensitive to odours, loud noises and bright lights and chemically sensitive. (Plus various other bits an pieces!)
Myofascial Pain Syndrome (MPS) is a painful musculoskeletal condition, a common cause of musculoskeletal pain. MPS is characterized by the development of Myofascial trigger points (TrPs) that are locally tender when active, and refer pain through specific patterns to other areas of the body. A trigger point or sensitive, painful area in the muscle or the junction of the muscle and fascia (hence, myofascial pain) develops due to any number of causes. Trigger points are usually associated with a taut band, a ropey thickening of the muscle tissue. Typically a trigger point, when pressed upon, will cause the pain to be felt elsewhere. This is what is considered “referred pain”.
The fascia is a tough connective tissue which spreads throughout the body in a three dimensional web from head to foot without interruption. The fascia surrounds every muscle, bone, nerve, blood vessel and organ of the body, all the way down to the cellular level. Therefore, malfunction of the fascial system due to trauma, posture, or inflammation can create a binding down of the fascia, resulting in abnormal pressure on nerves, muscles, bones or organs.
This can create pain or malfunction throughout the body, sometimes with bizarre side effects and seemingly unrelated symptoms. It is thought that an extremely high percentage of people suffering with pain and/or lack of motion may be having myofascial problems; but most go undiagnosed, as the importance of fascia is just now being recognized.