Stiff Person Syndrome, is There a Cause?

 I'm not a doctor and can only write from my own experience and the experiences I've collected from speaking to others. If you believe you have any kind of illness then please seek out help from a professional.

Stiff Person Syndrome: a summary

With Stiff Person Syndrome being an incredibly rare condition, it's difficult to get any information. A good place to start is the official Stiff Person Syndrome website for the UK. Even though Stiff Person Syndrome was first discovered in the 1950s there is still very little research and many doctors will have not even heard of it. On average, it takes about 7 years to get a diagnosis. They diagnosed me in just one year as my consultant was familiar with the condition and knew what to look for.

Stiff Person Syndrome (I'll call it SPS from now on) is an auto-immune, neurological condition. Medically it is diagnosed by a mixture of symptoms, nerve and muscle control and anti-bodies. The main rogue anti bodies being GAD and Glycine Receptor. To get to a diagnosis a person might have to endure blood tests, a lumber puncture, nerve conductive tests, and electro magnetic muscle tests. 

There are many treatments, mostly drug based. A lot of patients can get good results from steroids, plasma exchange or immunoglobulins. Some can live fairly normal lives, some will be disabled for life.

The Causes of Stiff Person Syndrome

Now, a doctor will argue that nothing causes SPS, it mainly just appears. The anti-bodies are a major factor. 

If you talk to people who have SPS you will probably see some sort of pattern emerge. So many claim to have undergone some kind of trauma before the onset of SPS. 

Maybe the trauma triggered the SPS, or that the SPS was already there and triggered the trauma. Some people had falls because of unexplained stiffness. Now, because we know that SPS causes stiffness in muscles so it's quite possible that before diagnosis you can experience symptoms which cause falls. And if you ask an SPS sufferer, you will know that any kind of mental trauma will cause their symptoms to get worse. A shock, stress, grief or even something as simple as a sudden noise or change in temperature can cause symptoms and spasms. 

In my case, I'd experienced a few symptoms of pins and needles and numbness, which may have been an indication that something was happening inside my body. But I'd not really thought about it. Then I fell down the stairs. I can't explain what happened. I was almost at the bottom when I just slipped and landed on my back. I hurt my wrist where I'd put it down to break my fall, but my lower back was most affected. I'd also noticed that my neck was stiff and I couldn't move it without pain. I didn't seek medical help, I went shopping at the local supermarket the next day. It hurt, but I carried on.

Seven months later I was taking my Father-in-law to hospital. I was the only driver in the family at the time, and I had to take him for a scan as he was having chest pains. He was really ill in the car, and I was terrified that he was going to have a heart attack in the seat beside me while I was driving. We got to the hospital, but he died in the foyer. I still find the experience difficult to talk about. The following few hours were extremely traumatic. 

Three days later I was in the hospital myself suffering from what I now recognise as my first SPS attack. I had a full body spasm which left me paralysed and I was in hospital for two weeks while I was treated and re-habilitated. My MRI showed lesions on my spine at my lower back (T10) and my neck (C3) The places that I'd hurt in the fall down the stairs.

I really think there may be some correlation between the fall down the stairs which started the damage to my spine and maybe triggered the anti-body reaction, then the trauma of my Father-in-law's death that caused my SPS. But as I said, I'm not a doctor. 

Asking Others

After talking to other people who have SPS it's quite common for bigger attacks of SPS or even the start of SPS to arrive shortly after a traumatic event, either mentally or physically. Some people experience sudden stiffness which cause accidents which probably means the SPS is already there. But other's claim they had no symptoms until their trauma. 

Here are a few real life stories of the onset of SPS.

" I had a very stressful job and was full of anxiety before my diagnosis"

" My husband passed away, then I was hospitalised with pneumonia"

"My father died in a tragic accident"

" I was crushed by my partner while doing yoga"

" I had a fall skiing but also flu shortly after childbirth and already had auto-immune conditions"

" my car hit a telephone pole and I hurt my neck, I also had a stressful job"

" I had a stressful career and my Mum died of cancer"

" I had a stressful job, my Mum and Dad had dementia, my daughter got ill"

It really seems to me that these anti-bodies that cause us so much pain and suffering are triggered by pain and suffering. The irony is depressing. 

What Is the Answer

Well, thankfully, SPS is very rare but I think people should definitely take better care of both their physical and mental health. We need to learn to recognise when we are burning ourselves out. My life was really stressful in the year or so leading up to my problems occurring, then the fall and the trauma probably just added to it. Not everyone who suffers from stress or has an accident will get SPS, but there seems to be some correlation. Not everyone with SPS has suffered from an accident or trauma, so it's not a definite cause either. 

There is no cure for SPS but some people can manage to get their symptoms under control with treatments and medication. I've tried most things now, with little success. My doctor was on the verge of going down the psychosomatic route before he found a new lesion on my brain. But even if it was/is psychosomatic, the pain and suffering is very real and it ruins your life. 

I have yet to persuade my doctor to try Rituximab but I will persist as it's the only drug I haven't tried yet. He told me that IVIG was better but I have heard different stories from other people. The other treatment is Stem Cell Therapy, which I am not really pursuing. For one, I don't think I'd be approved, and I'd end up having to spend a lot of money that I don't really have for treatment privately. Secondly, it's a very invasive treatment with months of recovery, which is great if it works, but it's not guaranteed. I know of only one person with my condition who has had the treatment, and it didn't work. 

In conclusion, if trauma and stress makes SPS worse, maybe the answer is to seek a life without either. I'm determined to change my mindset, eat healthier, exercise within my limits, keep my brain active, and supplement my medication with alternative therapies. (although, I have heard that physical alternative therapies like acupuncture, reflexology, cupping, massage, etc. can have adverse affects, so I will avoid them. 

I already know and practice self Reiki, and now I am learning to incorporate this with crystal therapy. I try to spend some time each day just doing the things I enjoy and help to take my mind off my problems. I journal, use mindful writing prompts, work on my mental health all the time. I have learned to eat better and to avoid the things that make me feel worse. I really want a better quality of life and lying around being drugged up is not the answer to my problems. 

Following are some ads which contain affiliate links so if you click them I may earn some money but at no extra cost to you. A lot of resources are free so please do take advantage of them. Thank you for your support.

Rare Disease Day 2021

 After a year of misery and confinement we can finally see the light at the end of the tunnel. Do we go towards it? We will, but with trepidation. 

I have had my first vaccination, so has my husband and carer and our eldest daughter who works for the NHS. We are now feeling a little more safe, although we know that we could still get sick. 

If you have a rare disease or condition, then you are even more at risk from the pandemic currently swarming our world. As someone who has a poor auto-immune system I don't know how my body would react to the Covid virus. It was a small anti-body that set my immune system into overdrive and caused all my problems in the first place. It has a name, the anti glycine receptor anti body. Because of that one little anomaly my body decided to attack itself and now I'm left in constant pain and wheelchair bound when outside my home. 

My daughter has a less rare condition, Elhers Danlos Syndrome. But she doesn't have the classic version and we are not really 100% sure what she has. She has been diagnosed with a Marfanoid Body Shape, but so far no other indications that come with Marfan Syndrome. Although they will be keeping an eye on her as there can be complications as she gets older. She also has a rare form of psoriasis, which is not responding to treatment. She has slight scoliosis but not bad enough for surgery. She also has Autism, which I believe actually helps her to deal with all her other issues. I can imagine that life would be very different if she was a typical teenager. 

So as people rush towards the freedom being offered, whether they take the vaccination or not is up to them. No one can force someone to put things into their body that they don't want. Some of us don't have a choice. And we need to stay away, and keep safe for longer because our risks are so much higher. We should all be thoughtful of others as well as ourselves. 

Today, Feb 28th 2021, is Rare Disease Day.

Stuck to the Kitchen Cupboard Like a Magnet

 I have spasms a lot, I had one in the hospital while having my IVIG a couple of weeks ago. Thankfully, the nurse knew what to do and slowly massaged me back into feeling again. Today, I had a spasm which glued my forehead to the kitchen cupboard. Ha, it sounds funny, it looked funny, but it isn't really funny for me.

I knew I had a spasm coming, I get warning signs, dizziness, tingling, even a weird feeling in the pit of my stomach. Over the years, I've learned to interpret these as warning signs. I should sit down, rest, try and stop the attack with mindfulness. It sometimes works. I had no warning at the hospital because I'd fallen asleep and woken up in spasm, these cant be prevented unfortunately. 

Today's spasm hit while I was cooking lunch. I'd managed to do lunch for everyone and was about to make my own when suddenly the pain in my legs became too intense and I just couldn't hold myself up. I didn't want to fall so I leant against the cupboard, my forehead was resting against the door. But then then spasm hit and I couldn't move. I couldn't lift my head from the door, when I tried it moved slightly and then went straight back like it was pulled by a magnet. I had no control over the rest of my body and my head was holding me up by being stuck to the cupboard. How weird it felt, and looked. Luckily there was family around an my wheelchair fetched. My husband, Graham, had issues trying to get me off the cupboard, my head didn't want to move. My body fell back into the chair, but then he couldn't get my legs to bend onto the foot rests. I was stiff and unbendable. I guess that's why it's called stiff person syndrome. The stiffness is very real. One day, it won't go away. one day it will spread to my organs and they will become stiff and stop working. That day can just wait, I'm not ready yet. 

Trust me, there have been times when I've wanted to bang my head against the kitchen cupboard. But it's not the same when it's not a conscious decision and my body just wants to do it for me. Losing control of your body is a scary experience. I don't think I will ever really get used to it. 

Then there is the pain. I can't even begin to explain how it feels but it hurts.

I need to get my brain to connect with the rest of my body again and the best way to do that is to move. But I can't move so I need someone to move me. This is not easy for me or for the person trying to move me, but it has to be done. Eventually, my brain reconnects and I'm able to move again. I'm left exhausted and in pain. 

This is such a strange condition, with strange symptoms. Even stranger is that because it's so rare it's hard to find someone who feels the same. Yes, we may share some symptoms but everyone seems to be different. I woudln't wish this condition on my worst enemy. I'm so grateful that it's not genetic and I won't be passing it on to my family.