New to these forums. I joined because I'm over doing this on my own. To be clear, I don't have chronic pain. My wife does.
I have five million thoughts and fears in my head. At times, I don't know what to think or feel. Hopefully writing it down will help. At least, ease the pressure I can feel building.
My wife Sasha has a condition that has been going on now for 6 months. It is getting steadily worse.
The pain initially started in her chest just under her left breast. It was a like a sharp pain, like when you get a cramp in a muscle, however, it would remain as a dull ache afterwards. These pains have steadily moved throughout her chest to her shoulders, neck, jaw, down her arms and into her hands. On bad days, she can't grip properly so I have to make her breakfast and do odd things for her.
Her spirit and feistiness are still there but they are a faded comparison to 6 months ago. Sasha has cried more in the last 6 months than in the total time that I have known her. It crushes my heart. I want my wife to be happy once again.
So what have we tried? Here is a list of what I can think of (it is not extensive but gives you an idea)
- Blood tests for pericarditis, rheumatoid inflammation (connective tissue issues), and infection or swelling
- Seen a neurologist. Nothing.
- We are friends with a chiropractor. Sasha sees him regularly (she has scoliosis) and he doesn't think it is a pinched nerve.
- She has an enlarged thymus gland, however, there is nothing significant there to cause the pain.
- CT scan
- MRI scan
- and plenty more.
We don't know what it is.
Not much helps with the pain either. Panadol, neurofin, and all other over the counter pain killers have no effect. Our cabinet looks like a pharmacy :P
Codine definitely doesn't work. The first time Sasha took it I had to pick her up from work. She is allergic to it. I remember stepping into the back office of the retail store she works at to find Sasha curled up in a ball, pale and bleak. It was a once off event. However, that pained look in her eyes and pale complexion are starting to be an everyday occurrence.
It's so goddarn hard to watch someone you love slowly get worse and worse and there is nothing you can do about
However, I admire the strength Sasha has shown. Even though she can't do too much strenuous activity (it sets of sharp pains throughout her body and leaves her breathless) she has been tenacious in what she can do.
- The garden is looking better than ever. If she can't do something, she has no problem getting me to do it.
- She has been ferocious with her cooking. I'm definitely enjoying the food.
- And she has been very proactive in keeping her social life active.
Our friends know she is in constant pain and have been a great support. Initially, they were
openly concerned and but now when Sasha clutches her chest with shooting pain they don't make a big deal with it. They are still concerned (I can see it in their eyes) but they don't make a don't make a big deal of it. I think Sasha likes it that way.
They think she is handling it really well, and she is, but they don't see her at night. Before bed is often the worst.
I have been finding it hard to get intimate. It's not that I don't find her sexy or beautiful. No, she's the best thing that's ever happened to me, and she has a killer body :D.
However she is is always in pain. If we start something, inevitably a shooting pain will happen and we stop. It is hard to start again.
These days I'm always anxious. Often when I come back from training (I compete in Brazilian Jui Jitsu
- Sasha use to as well) I often wonder if I will find her collapsed on the floor. Both Sasha and I have shared the same fear of her not waking up in the morning.
I can't imagine what it is like to think that not waking up in the morning is a legitimate fear. She is 23 in four days. No-one should fear to go to sleep at that age. But she does. And I do.
Recently we saw our GP after the neurologist consultation and rheumatoid blood tests came back with nothing. We still don't know what is causing this behaviour
. For now, he suggests we, at least, deal with the pain while we go from specialist to specialist.
I'm not a fan of just dealing with the symptoms. I prefer to find the cause and deal with that. But it has been 6 months with consistent pain that Sasha needs a break. It's not a long-term solution by any means but is something to make it easier while we find out the cause of the problem.
This particular medication (the name escapes me) does something to the nerves where it stops the pain signals from reaching the brain. It also calms the nerves.
Years ago, when Sasha was 12, she suffered from an inflammation of the Myelin Sheath
around the base of the brain. As a result, it has left scar tissue around that area of the brain. It doesn't impact her at all in her day to day life.
2 years after this incident muscle twitches in her thighs started and never left. In the last year, the twitches have spread and are now in her arms. Not badly, but enough to be noticed.
We went to the neurologist to see if it was related. He didn't think so. It was definitely no Motor Neuron Disease either.
Sasha still has scarring on the Myelin Sheath from when she was 12, however, nothing has changed since then. The twitching is random, and can happen without explanation.
Anyways, one of the benefits of the new medication is it calms the nerves and can "reset" them. So it might stop the twitching. We are not keeping our hopes up, however it is an interesting thought to entertain.
The drawbacks of the drug is it can often cause dizziness and sometimes fatigue. But we can manage that. Anything for Sasha to get some relief.
However, there is one side effect we found out from my mum (who is a nurse) that got us concerned.
Sasha went down to Sydney, Australia (we live in a rural town 6 hours from Sydney) to get a quote on a sleeve tattoo she has always wanted. Now that the twitching is spreading, it has created an urgency to get it done. If the twitching gets significantly worse then she won't be able to get it.
Whilst in Sydney she stayed with my family. My mum is a nurse at once of the larger hospitals in Sydney. She seems to know everyone.
My mum has been a godsend throughout this ordeal. She has not only been a great support and listener as a mum, but her background in medicine has helped us understand in further detail what everything means. She translates medical speak to layman's terms. She has also been great at using her vast network to fast track a lot of our appointments and running test results past other doctors for an on-the-fly second opinion. She has been amazing.
Sasha had been talking to Mum that evening about
the new prescript
ion to find out more about
Mum was the one who told us the potential benefits around the twitches, however, she also mentioned another side effect that our doctor did not mention but is important to be aware of.
It doesn't happen often (around 1 in 500 people) however the drug can change the thought processes of a person. This can lead to depression and suicidal thoughts.
My job would be to keep an eye out for any changes in Sasha's personality. If changes do occur then Sasha would have to be weaned off. As I said, it is rare but it's scary to consider.
So here I am with the house to myself (Sasha is driving back today). It's a beautiful day and I am sitting in the sun, attempting to capture my thoughts and make sense of them.
I am grateful for everything we have. Great family. Great relationship. Good friends. We are still pursuing our dreams relentlessly. We live in a nice house in a good town.
We are happy.
But this is in the background and it is having an impact. Every day is getting harder and harder.
I hope it goes away soon.
Either way, I will be relentless in my pursuit to get this sorted. I won't give up. I don't know how I will do it. I don't know how long it will take.
All I can say is it will get sorted and I will do anything to get it done.
All I have is my word, my intention and my actions which are aligned with having this wish fulfilled.This will not be forever.
If you made it this far, thanks for reading. I will try and keep this updated around once a week. Writing it has really helped and I hope our journey can help others.
Post Edited (Concept) : 2/12/2016 5:05:55 PM (GMT-7)