The Personal Journal of a Stiff Man Syndrome Sufferer
One day in November 2003 1 tripped over a flap of a large box in the workshop and broke my knee cap in pieces and, with great hilarity from my work colleagues, they they carted me off to A&E. I had fallen over a health and safety box full of accident prevention material ! After an operation to wire it back together I was in plaster from hip to toe for six weeks.
When I came out of plaster I thought a few weeks in the gym would get me back to normal how wrong I was. I began to go terribly stiff in my back and legs especially when talking to people I found it difficult to walk away, and to my horror crossing a road became a nightmare. I had to wait until there was nothing in sight before I could cross, and I’m a townie used to skipping in-between cars, and on one occasion a car hooted and I immediately froze. What is going on I thought?
In April of 2004 one Monday morning I got up for work as normal bent down to put on my socks and started to shake, it took me an hour to get dressed and finally very stiffly set to work, This happened for three days, in the meantime I made a doctor’s appointment for the Friday and in the meantime visited the occupational health dept. at work to get a “sock puller-upper”, and helping hand device and even a long shoe horn which I find very useful. These things got me over the initial problems of back spasms but I still had trouble bending over the sink to wash and doing up my shoes, and I still do.
On the Friday the doctor told me the encouraging news that he thought I had the early symptoms of Parkinson’s disease, whoopee that made me feel better! He sent a letter to the hospital for me to see a neurologist. In the meantime I began to have frequent falls, I had fallen over a few times and thought nothing of it, but one day in May I fell in the road and broke a bone in my hand. The next day I thought I would get to work early and go to A&E to get some tubigrip put on it to keep the swelling down but it took me over half an hour to walk from my work shop to A&E, I was so stiff, but when I finally got there I started to go into spasm whereupon they threw me into a wheel chair and decided to keep me in to find out what the problem was. I was there for two weeks. I saw umpteen doctors and three consultants, who hadn’t got a clue what was wrong with me, Parkinson’s was ruled out but no alternative was given.
Eventually I saw a neurologist who immediately diagnosed SMS, I was then packed off from Kings Lynn to Addenbrookes in Cambridge, where the diagnosis was confirmed. Issued with diazepam and baclofen I was sent home, since then I have increased the baclofen but still go stiff on occasions and had a couple of bouts of back spasm. Once when I was in the shower I couldn’t get out for three quarters of an hour, at least I was very clean at the end of it, but when one lives on one’s own these things can be quite frightening.
For me mornings are the worst, once I’m at work and moving things improve alhough anxiety and fears in certain circumstances still make me go stiff. Bending is a problem. I have physio twice a week although it helps my knee it does nothing for the SMS. My legs still feel like tree trunks as if I’d run a marathon.
I realise I only have SMS mildly but it does make one anxious and fearful of the future but then I’m luckier than most - I have a faith in God who I know will never leave me or forsake me, and who will soon put an end to the terrible suffering in the world. I know most people will not believe this but this hope keeps me going and gives me strength to carry on regardless.
I realise unlike some SMS sufferers I work in a hospital and was diagnosed quite quickly, the neurologists there - Dr. Brown and Dr. Barker - had seen SMS patients before and recognised my unusual walk, so I feel quite fortunate especially as I can pop in to see Dr Barker for a quick word any time on a Monday when he is there. The only problem is they never seem to know the answers to the questions I ask. I suppose that’s what comes from being so privileged to have such a rare disease and being one in a million!
If this is a progressive disease how quickly does it progress? Can we do anything to slow it down? Why do I only experience back spasms in the mornings? Never at any other time even though my tablets are evenly spaced? Why do I feel anxious about having lunch in a crowded canteen and going stiff when I go to leave? I suppose it’s the weaving in and out of the tables that makes me feel uneasy, a bit like going down slopes fearing you might go to fast and fall. Is it all in the head, perhaps I’m going mad! Senile dementia is setting in early after all I am getting on I’m 55 you know.
Anyway its all part of life’s rich tapestry, it could have been worse. Since writing this I have stopped going into the canteen as it’s too embarrassing, sandwiches in the workshop suffice. What will happen next I wonder? I might wake up and it may all be a dream!
If anyone can help me or I help anyone 1 would be pleased to hear from you.
Pete M 01553-760540 .
Hi fellow stiffys, happy new year to you all,
It’s been a long time since I last put pen to paper as it were. As an ex-carpenter I’m not very good with computers. If it wasn’t for the spell check it would be double Dutch, as my father used to say.
Well after I was diagnosed with sms in 2004 I carried on working for the NHS at the local hospital as a maintenance chippy or “wood technologist” (to give its correct title). The hospital was very good at tailoring my work to what I could manage; cutting keys, mending locks, breaking in to drugs cupboards when they had lost or broken the key!!!!!!!!!!!!! Also Taking the mick out of the nurses and creating chaos, (which I was very good at), until I began to have a few quite bad falls, which was always fun being taken to A&E where the nurses would give me some stick, but it was all good banter. They said the x-ray of my ribs looked like a road map!!!!!!!!!!!!!!!! and they ought to throw me in the skip. Typical, the things I had to put up with, but I suppose I deserved it.
Finally after talking to this nice blond nurse in Endoscopy I went stiff and fell backwards, (always the worst kind, of fall I mean), and managed to brake a few ribs in my back when I hit the desk, (which my workmates thought was quite funny. They were just jealous of my harem as they called it). That was in Oct. 2008. The boss, finally, along with staff health decided to retire me, which I was a bit miffed about. But there was nothing I could do. I have always been a “doer” and enjoyed work, but had to be realistic and give in. I still do small jobs around the house but can’t work for long.
I have now got a four wheeled walker with a seat for when I am out, which I keep in the car and would recommend to anyone who can use them. They are so much better than two walking sticks. I also have a three wheeler for indoors.
As regards treatment I have the usual Diazepam and baclofen and others, also Ivig every four weeks which doesn’t seem to do much, but I know it does, ( for me anyway ). A few years ago it was stopped and I was given a two week course of rituximab or some such thing that I can’t spell, so I stopped my normal monthly dose of Imuglobulin. After three months I was so stiff I could not walk at all and had to be carried from the ward. I then had four months off while having my normal Ivig., after which I returned to work with a great big hug from a Sister, (which was nice being as I live on my own!!!!!!!!!!!!) So I know it works for me.
Having said all of that, my normal Ivig called Octogam has been stopped worldwide, so they gave me Provigil which was ok. Then, they could not
get that anymore so I had Kiovig. This was about four months ago. Unfortunately even though the nurses followed the instructions, they never managed to put it through at the maximum speed because I felt quite sick. After the two days of that, I could hardly walk at all. It would take me half an hour to get dressed and everything became so much more difficult than usual. I would get stuck and hold on to anything at hand. My daughter brought my walker in from the car so that I could sit and make my breakfast and so on. She, bless her cotton socks, has two young boys to look after, but helps me when she can. She came to the rescue the other day when I came out of a shop and got completely stuck. I could not move, so she came, got me back in the car and did my shopping for me, complaining that I am too independent. Ha what does she know??????????????
I always look on the positive side of things I regard this as a minor problem. All part of life’s rich tapestry. Having worked in a hospital for a number of years and seen people desperately ill on the wards, including the mental ward, poor people, and seeing two ex working colleges die in McMillan of cancer, I count myself very lucky. My theme song, as people in the hospital know, is “always look on the bright side of life”
I still have not fully recovered and have to have my infusions over three days, very slowly. A consultant said that it might gradually wear off over time. I have to go to hospital in my wheelchair now, which I do not like using as I do not want to weaken the muscles in my legs. So you have to be careful when having infusions and tell the nurses of any unusual feelings at once.
So, be careful, don’t let it beat you and be positive. Always remember it could be worse. Good luck.
This site is solely for the support of those suffering from Stiff Person Syndrome (SPS). Family and friends of sufferers are also welcome to the same support. The site may be of interest to caregivers, care professionals and researchers, together with advocates for the condition and the general public.
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The group and charity was set up by Liz Blows with the following aims:
(1) The relief of sickness and the protection and preservation of the health of persons affected by Stiff Person Syndrome, together with their families and carers.
(2) On-going education and awareness-raising within the medical profession and the general public of Stiff Person Syndrome.
(3) The promotion of research into the causes, effects, treatment and management of Stiff Person Syndrome.
"Stiff Man Syndrome" (SMS) was the name assigned to the condition when first identified in the 1950s by Moersch and Woltman in the USA. In recent years, in the modern world of PC, the condition has become more widely known as "Stiff Person Syndrome" (SPS). SPS does not differentiate between sex, colour, or creed, although UK evidence tends to suggest women are most at risk.
SPS is an auto-immune neurological condition. It is unique due to its lack of significant similarity to any other neurological diseases. Although rare, once observed it is quite unforgettable. However, many neurologists and GPs are still unaware of the condition. In most cases, the first symptoms are insidious and victims are often initially misdiagnosed with anxiety or depression.