I find it very interesting to see the pain managed so successfully with non-narcotic drugs. I’ve been in pain for years supposedly from my arthritis although my case is quite complicated. But isn’t everyone’s case different and complicated in other ways?
NSAIDs (non-steroidal anti-inflammatories) helped the pain but this was far from complete. And these types of drugs are not meant to be taken forever. The ideal case is that you get an acute inflammation from something eg spraining your ankle and you go on the NSAIDs for 10 days to aid with the healing. Arthritis, however, is not an acute situation but rather is chronic. People go on the NSAIDs because of the pain and the drugs help to different degrees.Unless the patient is persistent about their level of pain, it often stops here. And the patients’ don’t know what is “normal” pain from arthritis. The one thing that they do know is they can’t manage many “normal” daily tasks and this can impact their quality of life (QOL) to varying degrees.
I know that we all have aches and pains daily but this is different. I’m talking about pain that interrupts activity and prevents movement. Sometimes I wonder if I’m not talking about two different things. But because they are linked together you can’t treat one without it having an effect on the other. So we are talking about secondary things that happen as a result of the arthritis. For example, uneven disc degeneration has caused me to have scoliosis. Without the arthritis I wouldn’t have scoliosis. And that’s just one example.
Osteoporosis can definitely affect the arthritis and the pain. Bone pain isn’t nice. And what else happens? So you see what I meant about complicated pictures…it can go around and around. In my case, they can’t do anything surgical for the scoliosis because the osteoporosis has made my bones too porous and cages or rods get attached to that bone. Imagine it breaking off because the bone isn’t strong enough.
I guess what I’m trying to say is that we are all complicated. And if there is pain and a reduced QOL, something needs to do whatever we can to help the patients (us). Speaking as a professional guinea pig, I can tell you it’s not much fun trying out the different drugs to see what works and what doesn’t. Keep in mind as long as you are unsuccessful, you’re also in pain. The doctors are too afraid of addiction to use narcotic. That’s crazy. If that is what it takes to improve QOL, then do it. But I can also tell you that that the slow release morphine does help but it is also incomplete. And the worst side effect is constipation. That might not sound like much but to have constant constipation means that you are also uncomfortable, taking lactulose or fruitlax and trying to empty your bowels. You get gripping and cramping and in the end, it may not work totally either.
What I’m trying to say is if you end up in this kind of situation where there are side effects and pain relief is not complete, that you can’t stop there. Pain is a really big issue. It affects your sleep which affects your immune system and your sensitivity to pain. It is a vicious cycle. So don’t settle for this kind of life. You have to give it all you have to get the specialists moving in the right direction with you. It is not easy to have to keep pushing but that is exactly what you have to do.
Before I saw Dr. Devonshire I was talking through gritted teeth because I was in so much pain. I was dead tired all the time and depressed. What kind of life is that? Think about it. It could be your mother or sister or even you. It’s a pretty poor QOL.
The first thing Dr. D did was look at the medications that I was on. Clearly a cocktail that was working to some degree at one point in time but ineffective now. And reluctance on my part to change only because of the additional side effects. So I was on Arthrotec 75mg (NSAID) twice a day, Nexium because the NSAID hurt my gut, MS Contin 60mg twice a day (slow release morphine for pain) and domperidone – a drug to help the motility of the gut to help prevent the constipation. At night I was on trazodone 100mg and clonazepam 2mg for periodic limb movement disorder and to help me sleep. And quinine for the night leg cramps. That was the only thing that was really working.
From there Dr D started with adding Cymbalta (60mg at bedtime). This is an antidepressant that has been approved in the US for firbromyalgia (but not in Canada). She said it was fairly successful at helping nerve pain. Well, I wrote a post about how effective it was. I could not believe the difference inside of 10 days there was a huge improvement. The next thing we did was change the trazodone which is good for sleep to nortriptyline (50mg) which is good for sleep and for pain. Again inside of a week I noticed an improvement. I had trouble sleeping the first two nights but was getting a much better quality of sleep after that. From there she wanted to do a steroid injection into the piriformis muscle because she felt it was compressing the sciatic nerve. She couldn’t reach the deep muscle in the office and last Friday I had the injection done with the aid of a CT scanner. There’s a post about that. Within 3 days I was pain free. And it’s 8 days ago now and I’m still pain free.
I can’t believe it. I had to stop the NSAIDs for the injection and didn’t notice anything from stopping. The doctor said to stay off them. I could stop the nexium because the offending agent was gone as well as stopping the domperidone because the gut motility seemed to be improving on its own. So that’s three prescriptions gone. And I really believe I will be able to stop the slow acting morphine.
I feel great except I have side effects from the new drugs. I know they’ll go away after being on the drugs for awhile. I’m scared to death to do anything because I don’t want a flare up. I have an appointment with Dr. D on Tuesday for an steroid injection into another fibromyalgia trigger point that gives me headaches all the time. I can ask about getting back on track physically when I see her for this. And I am able to walk abut 1 hour and not feel like I have to sit or stretch out as soon as I get home.
So the whole point of this is to tell you not to give up. Don’t settle for the pain and everything that come with it. Fortunately there are new drugs and new combinations being looked into all the time. Often it is the combination that works when each drug alone might not. Don’t become complacent. I know it’s tough. Your life is one big doctor’s appointment. But there is hope. I guess that is the message. There is hope and possibly a way out of the dark.
