Thursday, June 7, 2012

Projects By Jane - The day my life begins

If you have not read Projects By Jane - The Beginning, this post won't make sense. If you're here for my bags' journey, come back in a week!

Where I left you guys hanging, I saw a new doctor, Dr Lee who is a pain specialist.

Speaking of hanging, I'm suddenly remembering that my orthopedic doctor did not leave me hanging. Although he could not diagnose me until after the tests, he arranged for me to get weekly acupuncture and physiotherapy treatment at the hospital. Maybe I wanted to forget these sessions because they were very painful and utterly useless. The relief from each acupuncture session worked only for 3 days. One day the acupuncturist who is a qualified doctor from China told me it was useless for me to continue. I was ready to quit anyway. The sessions were painful - having needles stuck all over your neck and shoulders for half an hour is not easy. But the reason I wanted to quit was I no longer felt any relief. The physiotherapy sessions were worse. It started with a hot pad over my shoulder. I hated it. The heat made me feel worse. After that, a physiotherapist would work on my muscles. They were rough and often hurt me. But I kept going because I had nothing else. Hubs really wanted me to stop because he saw no purpose in going. I was unaware then but the stress from the sessions triggered more pain.

One day I went back to my GP and I told her about my problems with the hospital's physiotherapists. She was sympathetic and remembered a patient telling her about a private physiotherapist who worked wonders. Her name was Alice. She gave me Alice's contact and that was the beginning of a very expensive relationship.

Alice used to work at the hospital where I was treated. I forgot if she co-owned the private therapy practice. She took me on as a client and worked on my muscles. My muscles were a mess. There were angry knots all over my shoulders. I thought I had found God. She could unknot all my knotted muscles and I felt a lot of relief. But she was very expensive. She cost $100 an hour. I wanted to marry her. I went to her for many sessions. She tried all sorts of nonsense on me. I even bought a water pillow from her. (I still use it because it's very good) I was the golden goose. Despite her magic fingers, the pain always came back. Just before I found Dr Lee, Alice was no longer able to fix my pain. Nothing she did helped anymore.

So it was a good thing hubs found Dr Lee. It turned out Dr Lee had experience treating patients with similar problems as me. He listened to my sad story, asked many questions. Finally he wanted to test the pain positions to confirm his diagnosis. He pressed very specific spots on my body to find out if they hurt. They all did. He was also shocked by how thin I was.

The day my life begins

Dr Lee gave me the good news. I had myofascial pain. I was so happy. I had no idea what myofascial pain was but I was so happy my pain had a name. If it had a name it means it could be treated.

More good news. It was treatable. He had a new drug which was being used successfully on myofascial pain patients.

The bad news? He could not guarantee I would be rid of the condition. It could be a lifetime condition and I may have to take medication until I die. I asked him if anyone had been known to recover and he said yes. I don't know. Maybe he was lying.

I didn't care anyway. I just wanted the medication. He prescribed 4 kinds of medication - one to treat the nerves, two for mood (anti-depressants) and one for the pain. The painkiller was very strong and he only gave me 2 tablets. The ones for nerves and mood was for long-term. Dr Lee said in pain therapy, the goal was not to use pain medication but to treat the root of the problems. The anti-depressants were helpers. The nerves meds was the one that could fix me.

I was warned about the side effects of the nerves medication which was quite scary. Basically everything bad you can think of. But I was desperate. I did not care about any side effects. Even if he said I would vomit all day, I would still take the medication. (Some people do suffer from nausea)

That night I took the medication and went to sleep. I was sure I would die in my sleep and not wake up. Of course I woke up. I felt stoned out of my brains. Everything was slooooow. I went to look at the mirror and I had turned younger by at least 10 years! All my wrinkles were gone. It was a miracle. I was also very lucky. The only side effects I had were feeling stoned and feeling sleepy. Some patients had it bad. They felt dizzy all the time.

I had to go back to Dr Lee's clinic for regular physiotherapy sessions. My therapist was Andrew. When he worked on my muscles, I thought I had found God. He had no mercy. He only had one request - that I don't scream. He was even better than Alice. He could go even deeper into the muscles. And because he is a man, he was even stronger. He also knew where the pain hurt the most. Although his sessions were very painful, I always felt fantastic afterwards. But, I certainly wanted to hurt him back. He was also old fashioned. He insisted I drink 2 cups of warm water after each session! (to wash away the toxins) Besides the physiotherapy, he also used laser on specific spots on my muscles. But this was short-term. I forget why. He only burned me once. He taught me a few exercises to do at home. The first exercise was deep breathing. I think it was the most useful exercise. I practice deep breathing even today whenever I feel stressed. Overall I had to do 10 different exercises 3 times a day. The exercises targeted specific spots on my pain zone. For each exercise, I had to do for each side of my body 3 X 30 secs. It was extremely tedious and I never enjoyed doing the exercises. But I wanted to get better so I did them without fail.

One thing I found different about Andrew's approach was he told me to do the opposite of what the therapists at the hospital and Alice had said. He said I had to do the exercises even if it hurt. However I had to listen to my body and not cause injury. I think this was by far the most important advice I had been given.

What I learnt from Dr Lee about my pain is each "attack" is a pain cycle. If I get multiple pain cycles, the pain gets very bad. This explained why sometimes I felt very bad (multiple pain cycles) and sometimes it was tolerable (single pain cycle).

If you're wondering what happened to my blog and sewing during this period, I did continue to make bags and blog a little. Whenever my pain was tolerable, I would sew. There were a few months when I completely could not sew anything. Just waiting out the pain cycles. I did not know it at that time but my sewing had a big part to do with my recovery. 

Under the care of Dr Lee and Andrew, I became well very quickly. Within a couple of months, I was back to my normal self and Dr Lee gave me a weaning off meds schedule. Everything went smoothly. One month later, all the pain came crashing back. Not only that, it was way way worse than before. I had new multiple pain cycles every day. Once again I could not sit and could not lie down. I crawled around my home. I went back to Dr Lee and the physiotherapy sessions. Dr Lee wanted me to be prepared to take meds for the rest of my life. Hubs became concerned. Dr Lee was very, very expensive. I asked Dr Lee for a discount and although he sympathized, the discount he gave made very little difference. I decided I needed to find a cheaper way to get the same treatment.

When one door closes, another door opens

Around this time, I was up to see my orthopedic doctor at the hospital again. It had taken an incredibly long time as my appointment had been pushed back twice as he was away. He told me all the tests came back normal. There was nothing physically wrong with me. I gave him Dr Lee's diagnosis and it's a small world because he knew of Dr Lee but was quite scornful of his prowess. I told him Dr Lee's fees was a drain on my family's finance. After listening to my sad story, the orthopedic doctor said he had a solution for me. At the hospital, there was a new unit catering to pain management which had opened up. He assured me Dr Lee's credentials were nothing special and his guy, the pain doctor was just as brilliant. The best part was at the hospital, the government paid part of my medical bills so it would only be a fraction of what I was paying Dr Lee. He took care of everything and I became a patient at the Pain Clinic.

At the Pain Clinic, I came under the care of Dr Tay who later roped in a pain psychologist SY to help with my problems. You know, I've always felt Dr Tay and SY were angels sent to save me.

In the arms of the angel,
Fly away from here.

                                                                                         Sarah McLachlan

to be continued.


Thongbai Tatong said...

Hi Jane,

What a load of pain you have had. I have occasional back pain too but compared to yours I feel mine can still be managed. Sorry to hear that it has caused you a lot of money too.

I admire your own strength and your hunsband's support to get though the tough time together. I am happy that finally you have found Dr. Tay and his team, who sound very good and helpful. Take care, Jane and get well soon.

antmee said...

Thank you for sharing your personal story with us. I had heard of myofascial pain but had no idea what it was about.

Hearing about the effect it can have on someones life and their long and difficult struggle to get it diagnosed and successfully treated hopefully will lead to a better understanding and support for people who suffer from it.

Take care and keep up with the exercises!

Suzee said...

As I been reading your story Jane, I wondered if sitting and using the computer too long would trigger that pain?
Before my surgeries I went to see MY God lol He was a massage therapist and he was wooondddeeeeeerfulll and actually helped. But the damage was too severe with my rotary cuff. when reading how your therapist managed you I felt the deep pain for you! I use to walk out of the office feeling like I was hit by a train, but would start feeling the difference it made for me after a couple of sessions..
Can't wait to read tomorrows!

punkychewster said...

oh my gosh. i cannot bear to read this. i want to get to the part where you get better, when sewing became your therapy and salvation. i don't want to read about your pain anymore you poor thing! no wonder you so skinny!!

Chris H said...

WOW.... now I want to know more... are you still attending the Pain clinic???

Carol & Eddy said...

I totally agree with punkychewster! My pain tolerance is super super low. We're waiting for the good part of the story ......

Little Blue Mouse said...

I'm glad you found someone who could put a name to your pain, and you could feel like you were getting somewhere.

I'd like to hear more now about how it's panning out.

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