For those who don’t know, a ‘Wheelie’ is a wheelchair user.
Both of the conditions I have are pain disorders: One is Chronic Myofascial Pain Syndrome (CMPS). If I lived in the USA I could add ‘stage four’ at this point (Stage four is the point of no return, where the condition affects many areas of life including voice and vision). The other is a later addition that is quite common and an annoyance that complicates the CMPS – Fibromyalgia (FMS).
It is so difficult to explain CMPS and FMS (plus the complications that come with their combination), and people often regret asking, so on the advice of others who have these conditions, I have put this page on the blog to refer people to. It means I can freely give some advice and make comments about how these conditions affect me and also add the official info at the end. It’s so much easier than having to keep explaining. Feel free not to read to the end of the official bits!
For those who have come to this page due to my work, because you are wanting to invite me, or myself and Steve to come and do some work for you – please don’t worry, these conditions have never stopped me doing my work – at all!
I’m not wanting sympathy (I hate sympathy!) or to be the centre of attention – but I hope this info will also help people to understand others who have the same conditions. (Note: These conditions are a spectrum, they affect everyone differently. It’s best not to compare!)
But firstly – my own comments:
I was born with these conditions (Some of my birth family have them too), but not diagnosed until I was 19.
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 these conditions and I don’t give in to them! I’m also very fortunate to be able to do that as not everyone can.
I use a wheelchair, and have two that are interchangeable depending on the situation or transport I need to access. I can use a crutch/walking stick if where I’m going doesn’t have level access so my smaller lightweight power-chair can be folded and taken up a couple of steps by colleagues, but walking will be very minimal…. This allows me to access more venues. Therefore – I can attend more meetings than I would otherwise!
Because of other associated disorders that go with these conditions, I have a lot of problems with my eyes, ‘acquired nystagmus’ being the main problem but also permanent eye pain, double vision and blurring fog. This makes reading painful. I can often see what’s on the page, but it moves around a lot, has a shadowed blur to it, and to look closely and read really hurts. Focusing in one place, especially when there is bright light involved (ie: projection screens at church) is difficult too. Seeing in crowded situations is harder as my eyes don’t know where to look and give up! The floor often looks like rippling shallow water. Tiredness and illness makes it worse. (Sadly – there is little info or advice out there about this).
So, If you need to send me paperwork, please send it either by email as an attachment, so my computer can read it to me, or on creme/light yellow paper in a sans serif font sized at a minimum of 16pt (Preferred 18/20pt).
Some days will be moderately OK on pain and wobbles (for a fibro sufferer!) – some days will be very 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
- Walking too far (anything up to 10 metres can ratchet pain from a 5/10 to a 12/10 and I get slower and more wobbly as I go – hence my hubby often calls me lurch!!)
- 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 CMPS/fibro 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. Some days will be a 5 or 6 out of ten, a lot will be higher. I haven’t dropped below a 5 in many years.
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.
The wife of your friend’s cousin (twice removed) may have these conditions too, and be able to do all sorts of things…. well good for them, but please remember that everyone is affected differently depending on many factors – both these conditions are a spectrum of symptoms and severities. Please don’t compare me to others.
Please don’t tell me God wants to heal me either – 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, 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!)
In my geographical area, chronic conditions don’t qualify for physio – If I want it, I have to pay for it. The same goes for the splints I need for my wrists – an OT recommended them, but I have to buy them myself, as again, there is no budget for those with on going conditions. Knitting is my physio – it keeps my hands moving, but it still hurts.
Aside from an understanding GP, I’m largely left to just get on with it!
Advice for my Friends:
- 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 – don’t squeeze!
- 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…..or give me the head tilt of compassion 😂
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 pain scale (One = good, ten = bad). This is also the secret code I use on social media for friends who are in the know: The post will read as a figure out of 10 (5/10) followed by where the pain is. If I put 12/10 it means the pain meds are not working. If I don’t put where the pain is it means the pain is all over. There – now you know how to pray for me with very little effort from me 🙂
Now to the ‘official’ info on these conditions:
Myofascial Pain Syndrome (MPS): This 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.
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. It can also give you the buzzing feeling of a constant electric current running through your body.
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 – (I have 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, buzzing 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 and pieces!)
NOTE: Classifications of Fibromyalgia change according to country and consultant. In America there is a much greater and more realistic understanding and most specialists classify it as a Neuro-muscular disorder, often hereditary. Sadly most specialists in the uk are still in the dark ages when it comes to this condition – the only ones willing to listen to American research are those who have the condition themselves.