How to Be a Friend to Someone with Chronic Pain

A really great post with some great advice on being a friend to someone with Chronic Pain. Thanks Rachel 🙂

College on Crutches

It has been said that you learn who your true friends are when you’re at your darkest moments. It is during those times that people who are just “sometimes friends” scatter away, leaving you at rock-bottom with those who are willing to stand by you until you regain your footing. Friends who walk alongside us through the flames are priceless gems, rare and simply irreplaceable.

If you are someone who has chronic pain, the valleys of life seem to be more numerous than the mountain tops, making it even harder to retain solid friendships. I have seen this in my own life as friendships have blossomed and wilted, changing with seasons. But, as I’ve said before, friendships and support from others are absolutely crucial.

Sometimes I think it’s hard for people without pain to really understand us or know how to be a good friend. I’m sure it’s confusing and…

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Turning Right out of Struggle Street

Sometimes it feels as if you hit rock bottom and finally something falls your way.  My last post Struggle Street https://sharonmunday70.wordpress.com/wp-admin/post.php?post=536&action=edit was a point where I was feeling so much worse than my post which was pretty gloomy. The phone call I received in the very final throws of my Struggle Street post was from the Pain Clinic with a Date with a new doctor. This was the turn about.

As each day drew closer to the appointment I was still waiting for them to cancel on me as they had done before. This time no phone call and the day I met Dr Fabulous as he will now be known as, everything changed. I did decide to bring a friend with me, a person that would be able to hear every word, mediate and jump quickly in to bat for me if I needed it.  I wrote pages found myself practicing in the mirror again all this crazy stuff I would do before I would go and see Dr Moleface (as one of my carers came up with…I love it) Within the first sentence of meeting Dr Fab I felt I let out a very long breath I had been holding. I was also a little scared that my second opinion would be tarnished by the desperate need for his opinion and if he knew the back story. After introducing himself he said that he knew why I was here for a second opinion but that he has not read my file as he wanted to give me his unbiased opinion….(that’s when I let the breath go, sit a little more easily in the chair and waited patiently for him to start the interview) My hand performed perfectly hitting every pointer I was told that I didn’t meet by the Budapest Scale of rating if someone has CRPS.  My hand was freezing cold…slightly purple, shiny (with an awful staph weeping rash all over it) and he even managed to look at both of my arms to see that my injured one – my left arm was in fact hairier which I had never been able to notice.  He was very precise and definitely in charge of the interview but that’s fine by me. He asked specific questions and when he asked “Ok so how is the Sharon these days” I told him that my life had completely changed.  At that point he stopped me and said that he wanted to know exactly what each pain felt like…for example the overpowering burning that screams so loudly that you can barely here people over the ruckus and the attention it wants. The left inner point of my wrist feels as if someone had gotten a hammer and smashed it into tiny pieces.  That the outer point of my wrist felt like a thousand wasps had stung all in one place.  The over all dull throbbing dull ache to your bones. That the inner forearm feels as if someone has a knife and is cutting down longways and other pains as well. He was confused by the reason that I continued to wean down off my opioids every few weeks.   I told him that my last specialist was so dead against me taking the opiods that when I got a sniff of feeling a little better I would start to wean down off the drugs quite quickly. He was very professional he did not shake his head or roll his eyes. At the end of the interview he said that I definitely had CRPS and that he would now be in charge of my treatment. Just like that. It has been many many years since I have felt looked after by anyone especially a male and the feeling was relief. That someone else could steer this bloody ship for a while. That I am just so tired of being the leader and medicating myself however I can with no degree in Health. That someone else was going to take the ball and run with it for a while.

First off he wanted me to start back on Lyrica a low dose and keep this going until my first procedure would happened (which is now next week 4^th April) He also wanted me to be taking my slow release oxy codone in a shorter cycle to hopefully keep on top of my pain a little better. Then he described what our plan of attack was.

Next Friday I am having a Bier Block IV Guanethidine. I have been trying to find CRPS sufferers around the world to see if anyone has had this procedure done and have not turned up anyone as yet. It will be one treatment fortnightly for 6 weeks. It will involve a drip in my good hand with sedation in it and drip in my bad hand (Oh GOD) that will be infusing Local Anaesthetic and Guanethidine into my tourniquet arm (Tourniquet oh GOD) I have a feeling this will feel very sore when the drugs wear off.

If this is not successful at helping the pain we would try a Stellate Ganglion which is a nerve block that goes in through your neck. He said with this procedure we would know instantly if it has worked or not.

The third option would be Ketamine infusions.

Life in that hour changed. I had hope. I haven’t had hope in all of this time. I have been wasting time looking at a doctor that just holds her head in her hands and re-reads my file sshhing me if I spoke. This time there was no tears but perhaps that was because I was in shock J

It’s been around 5 weeks since I saw this specialist and my head is completely in another space. One dose of Lyrica completely took all of the burning away from my arm. With Lyrica comes other problems so while I wanted to be celebrating with my pain being so much easier to deal with I was hit with an Ear Infection so savage that I had to go to emergency as my eye had swollen over and lots of fluid was coming out of my ear. Now I have lost the use of my right leg but apparently neither of these problems could be drawn back to the Lyrica. My bad knee (6 surgeries between 1986-1997) was not re-injured but it has swollen up to the point that it is unstable for me to walk without a walking cane. It’s been like this for 12 days. Somedays it is less swollen, some days it doesn’t hurt but it is swollen. It’s difficult to say the least as even with a walking cane I don’t feel very stable as I should because I am using it with my only good hand which isn’t the right hand. It also means that I won’t shower myself on Saturdays or Sundays as it is very painful and dangerous getting in and out of this tiny little area now. I can’t walk and carry anything – this is not convenient being home alone all day…eating meals standing in the kitchen when I am alone. Standing hurts and walking hurts just short bouts on the cane is fine.

But all in all – there is hope.

RSD 101

RSD 101.

http://missrsd.com/rsd-101/

I have recently stumbled upon Miss RSD and her beautifully written blog.  For some reason I am unable to reblog this particular blog …who know sometimes Word Press just hates me.

This entry RSD 101 I particularly like as I have a lot of trouble trying to explain to one and all this condition (oh by the way RSD and CRPS is the same animal) I found this blog was really well written and made it nice and simple to understand the basics.

Here is a snippet below and please have a look at her writings and her story.

 

“What does that mean?”

Put simply it is a pain problem. There are two basic types of pain: acute and chronic. Acute pain is temporary, though may be quite fierce. Acute pain, when treated, tends to be gone before the 6 month mark. Chronic is persistent pain, that can last for years beyond the inciting injury or illness.

RSD falls under the umbrella of ‘chronic pain.’

“So what’s wrong exactly?”

The sympathetic nervous system is supposed to carry messages to the brain. Lets say you get a paper cut. These sympathetic nerves say, “That caused pain! RED ALERT!” And passes the message up the chain to the brain, the big boss. The brain transmits to the rest of the body that there is a problem, all available rescue teams roll out.

The problem is that in the case of RSD, the brain is working on flawed information. For whatever reason, the sympathetic nerves are stuck in a loop of “RED ALERT!” The brain, trusting those nerves, responds accordingly by making us aware of the problem. Making us feel the pain. And boy do we feel it.