Overcoming My Wifes Unknown Condition - Journaling the Journey

Hi guys,

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.
  

Nothing.

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 it.

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 prescription to find out more about it.

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.

Scary.

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.

Nathan

Post Edited (Concept) : 2/12/2016 5:05:55 PM (GMT-7)

I made it to the end of your post and find it very interesting. Welcome to both of you.

The beginning of Sasha's pain reminded me of a gall bladder issue I had. I described it as feeling like a rope was being twisted tighter and tighter. That pain was centered just below the ribs.

We find here in the US that a teaching hospital can be helpful in finding a cause when it's not obvious where the pain originates. They would look at her whole body. Is something like that available to you?

Thanks Abilene and Sunny,

@Abilene: I'm not sure if we have something like that. I will look into it. Thanks!

Welcome Nathan and Sasha to the forum and our world of chronic pain. I'm always bothered when new members are as young as your Sasha. Unfortunately pain is not picky in its choice of who it invades.

I wish we had some magical answers for you,something more than the many years of experience we have gained through living with chronic pain and all the trials and errors that have given us far more experience then we wished for. It's this experience we come together here sharing with others in the hopes that we are able to help even just one person.

You sound like you have been doing all the right things just haven't seen any positive results and this happens much more frequently than you would think. We see so many like yourself and your Sasha searching for answers.

I urge you to not give up,keep searching and like stated already a teaching hospital is a medical school affiliated hospital. As for the medication it's likely cymbalta or lyrica and many many of us are on one of them. Yes that chance is there,its slim and tryas long as someone who knows you is aware to watch for changes everything should be fine. They benefits most of us gets from these meds is far greater than the risk.

Keep us posted and good luck

Thanks for all the positive support guys.

Just under three weeks has passed since my last post.

Things are looking better which is good.

We originally started on the anti-inflammatories for about a week before starting the Lyrica.
The first week on the anti-inflammatories had produced nothing. We hadn't started the Lyrica at that point, so we were hoping that it would help.

Two weeks later, the Lyrica does look hopeful. Sasha is now on two tablets a day, and we are starting to see results. Which is very exciting.

There have been some side effects with the Lyrica which is to be expected. Dizziness and tiredness have come and gone but they are not consistent. One unexpected benefit is Sasha is getting some decent sleep.

In the past, she has had difficulty getting to sleep. The pains have definitely not helped either. However with the pain subsiding and the drowsy side effects of the Lyrica she is getting some solid sleep and is feeling fresh in the morning. (I will make a morning person out of her yet! )

With the pain subsiding (it is still there but not as intense) Sasha's mood has definitely lifted. The pain is still there but I think the hope that this medication will work has improved her mood.

Last Saturday was a very good day for Sasha. There was hardly any pain in the morning so Sasha decided to come to Jui Jitsu Training with me and just do some of the basic drills and exercises to see how she goes.

Before all the pain started, Sasha use to do training six times a week and regularly competed. Not doing Jui Jitsu has probably been the hardest thing for her over the last 6 months.

Last Saturday she ended up training 90 minutes out of a 2 hour training session. We were over the moon!!!

In the past, usually after 5 minutes the pain is so excruciating that she has to stop. The pain was there, but it was manageable and was nothing compared to what it usually is. If she had done any exercise then the pain would remain for a good 2 hours afterwards and she would be exhausted the next day. This time was only pain for about 15 minutes, and the next day she was fine!

I cannot express how happy I am for Sasha. She is just relieved. It is the first time that she has been able to experience anything close to normal since this all began.

We will try training again next Saturday to see how she goes. If everything goes well, then we will bump training up to two times a week. Baby steps. We will see how everything goes and manage it accordingly.

The twitches in her arms and legs are still there but it doesn't seem to have gotten worse. She is actually heading down to Sydney as I type this to get the sleeve tattoo outlined (just in case they do get worse and she can't get the tattoo due to the twitches). She is very excited!

So the fact that the pain is starting to be managed is great. We have an appointment on Thursday with a specialist to do some tests to do with her nerves. Hopefully, we can find the source of this pain. i'll keep you posted with how it goes.

Again thanks for reading, and for the advice given. Your support means a lot.

Nathan

Hi Nathan it's great to hear that sasha is making some progress. I have chronic pain and muscle spasms and for the spasms my GP suggested magnesium tablet which you can get at any where so next time your at the doctors maybe ask them about it, I have relief from the spasms taking it. I hope that sasha continues to improve and that you find out exactly what is causing all of this. Take one day at a time .
From vic39