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Friday, January 20, 2017

Seeing Some Fibro Pain Improvement from Nortriptyline

A bit of good news after two attempts to find a medication to help with the nerve pain in my hands and feet, I'm actually responded to the latest one - nortriptyline. I've been on a low dose for about a month now and in the last week or so I've noticed some improvement. I still get the pain when I'm on my feet or do any cleaning or whatever with my hands. By the end of the day I'm still in pretty bad shape but the aggravation of the day usually resolves overnight. I'm also able to do a little more with my hands before the pain takes over.

I had a follow up appointment with the neurologist this week and he is going to have me slowly increase the dose in hopes of seeing even more improvement. The thought of actually getting some relief, well, it's thrilling! I spent so many years trying medications for my chronic migraines and never seeing any benefit. The constant ups and downs of hope in a med and disappointment when it wasn't effective conditioned me to NOT expect relief. Especially considering the fact that all of these meds are ones I've tried as migraine prevention.

As always, the downside is in the side effects. The big one with this medication is the dry mouth. It wasn't bad at 10mg but it was more noticeable at 20mg. I just increased to 30mg and it has already become a bigger issue. Also my doc noticed I've developed a small tremor in my hands. It was minor enough that I hadn't noticed it. He said this can be a side effect so it is something we will keep an eye on.

When it comes down to it, the benefits far outweigh these side effects. I might actually be able to resume using my hands and feet in a more normal fashion. Even retaining the small benefit I've already seen would be priceless to me. The chronic migraines and other effects of the fibromyalgia are hard enough to cope with.

Tuesday, January 10, 2017

The Challenge of Understanding

Every now and then one of my friends will encounter some challenge in their life that they never saw coming (divorce, rough pregnancy, etc). Suddenly they are thrust into a terrible challenge and they find themselves being judged and hurt by the response of people around them. As they emerge from it they will write a lengthy facebook post preaching about those challenges and how the responses of others has hurt them and how it only added to their burden and made coping more difficult. They go on to plead, with all who read, to show other people, going through their specific challenge, compassion and kindness because it actually is really difficult and can't be understood unless you've also gone through it.

I tend to be of the mindset that the only way to understand what it's really like to go through anything is to actually go through it. Even then, you can only ever know what it's like to go through it as you, with your temperament, personality, intellect and background. So when I see my friends make these kinds of posts I always want to reach out in the comment section and point out that this is true for all people going through all challenges - especially when this is coming from someone who has gone out of their way to paint entire groups of people with harsh judgement, which completely lack perspective and context.

As someone living with chronic invisible pain, I'm constantly facing these sorts of challenges. Yes, it does add to my burden and make coping with a very difficult situation even more difficult. I totally get why they want to reach out and plead with people to understand and be kind to those who are going through the same thing. But I keep finding myself feeling frustrated when the lesson they learn is always specific to their situation. Even if unintentional, their plea that we shouldn't minimize the experience or judge someone going through X, implies it's still okay to think people going through Y are lazy, weak, immoral, or whatever. Again, this feels especially true coming from people who are unapologetically judgemental.

It's the same with politicians. Often times when you find a politician fighting hard for rights, research and policy change for a specific populations it's because they are personally impacted by it. We have a state rep who ran for reelection this year, who boasted in his commercials about how he fought to make it easier for children with autism to have access they didn't have before because he had a child with autism and knew the challenges. That's all well and good for children with autism but I wish the lesson he learned was that all children, facing all kinds physical, mental and socioeconomic challenges deserve the benefits he fought so hard to get exclusively for children with autism.

Why can't we all see that we all deserve the same go at life? When we all do better we ALL do better. Why is that such a hard concept to realize?

Friday, January 6, 2017

Feeling Defeated and Weary Today

It's so defeating. The inescapable, intense pain. The nausea. The exhaustion. The pulsing. The sensitivities. The damn chronic migraines - I just hate this!

I have things to do but instead I'm fighting the migraine monster. There is almost nothing left of ME. The triptans allow me to regain a very tiny piece of myself for a few hours here and there but the migraines are all consuming.

Yeah, yeah, eventually it will pass and I will get some of me back. But I don't know how far off relief is. All I know is that it won't last long before another migraine consumes me.

Even after 11 years of living with chronic migraines the pain still frightens and overwhelms me. I feel weary today.




Thursday, January 5, 2017

The Migraine Medication Game

I hate the migraine medication game. You know the one I mean? When you are only allowed to treat 9 of the 18 migraines you have each month so you have to try and pick which ones to treat. I have lots of guidelines to help me make my decisions.

Don't:
-treat migraines that are less severe
-wait to long because the meds are most effective when taken early
-treat any migraine that starts in the late afternoon or evening because relief can take up to 5 hours
-treat too many early in the month because you never know what's to come
-take more than 2 pills in a 24 hour period, but taking 2 pills in one day might mess up things for the next day

Do:
-treat the most severe
-add in some ibuprofen before taking a 2nd pill
-take them as soon as you can because the pills are more effective that way

The trouble is that I'm not psychic. I do my very best to guess how severe each migraine will be, but it's never really more than a guess. I'm wrong as often as I am right and the price to being wrong is steep.

Yesterday was a great example of how things can go very wrong, even when the guidelines are followed. Here's what happened. I was in the early stages of a migraine in the late morning and so I closed all  the shades and hunkered in. By 2pm I was moving into the pain phase and decided to go ahead and treat the migraine since I hadn't had a migraine for a few days. An hour later, once the medication started to hit my blood stream, the pain got worse. My rescue med always makes the pain worse before it starts helping. Unfortunately, this was one of those times when it took more than 5 hours to start providing any relief. And when the relief came, it was inadequate and only about an hour and a half before I was going to go to bed. 

My day was ruined and, worst of all, I wasted a precious rescue med in the first week of the month. 

I HATE this game!! I'm so tired of playing this damn game! 

Thursday, December 29, 2016

Good-bye 2016, Hello 2017

This has been an all-around tough year so I'm fairly glad to see it coming to an end. Like every year, I'm hopeful that the new year will be better than the last. While I certainly don't know what changes and surprises 2017 has in store, I do feel like hubby and I are setting ourselves up to make some purposeful changes in our life - and I'm excited about that.

I'm also feeling some anxiety and fear. I'm worried about the coming changes to the health care laws. I'm worried about the pain in my hands and feet. What if the medications don't help? What if I have to live the rest of my life with this increased pain? What if I am never able to return to any of my hobbies? How do I cope with this? 

I know 2017 is going to be full of challenges for me. I hope I will tackle these challenges with some courage and, ultimately, triumph over them. I could sure use a win.




Friday, December 23, 2016

Christmas Shopping with Migraines and Fibromyalgia

Christmas is almost here.

The onset of severe hand and foot pain this past August has made the holidays a real challenge. Even after abandoning the very thought of doing any holiday baking or bringing a dish to pass, I've still needed to do some shopping and some wrapping of gifts, which has aggravated both my hands and my feet.

Of course I did as much as I could online but online can't always take the place of shopping in a store. In a store you can look around and get ideas. You never know when you might stumble upon something wonderful that you never would have imagined. The item may be available online but you can't really do a search for something you don't know exists. Plus, it can be hard to get an idea of the quality of an item online. Pictures can be quite deceiving.

This year we found several gems in the stores and so I was glad we went shopping but, unless I get to feeling much better soon, I don't know that I can do this again. Every moment I'm on my feet I'm aggravating my foot pain and the more aggravated my feet get the worse the pain is even when I'm resting. Not to mention how difficult it then makes doing basic things around the house like laundry.

The wrapping was a big mistake. Everything I do with my hands aggravates the hand pain. Every. Single. Damn. Thing! I need my hands for showering, dressing, eating and drinking. The wrapping was an unnecessary aggravation. One that hubby will have to do from now on.

Going to the stores is always further complicated by the migraines. I can make a plan and rest my hands/feet all I want but if the day comes and I have a migraine none of that matters. No plan is ever safe, not even Christmas with the family.

Maybe the thing to do is make Christmas preparations a year long activity. We can keep our eye out for gifts all year long. Perhaps I can ask everyone to make an amazon wish list or just give only gift cards. Or maybe I'll actually find a way to control this new pain better. Obviously, that would be the best solution.

Christmas is the least of my problems if this pain persists.

Monday, December 19, 2016

Now on Medication Trial #3 for Nerve Pain

As expected the gabapentin made my nerve pain worse, so I'm off that. My doctor then prescribed Lyrica, which looks to me to be very similar to gabapentin. As expected, after 3 short days on Lyrica, I was having the increased nerve pain and trouble focusing my eyes.

Now that I'm done trying the two drugs I was fairly certain to have adverse reactions to, I'm ready to start trying to ones that have a better chance to being effective. I'm not sorry to have tried them again because I am just that desperate for some relief but I'm glad I didn't have to waste much time. 

The new trial is on nortiptyline, which is actually an antidepressant. This is one of the drugs I tried for migraine prevention along with amitriptyline and protriptyline. Obviously they have were not effective at preventing my migraines but I'm hopeful for some benefit with my nerve pain. Since it's very unlikely I'll have increased pain as a result of this medication, it'll be a while before I know if it's effective. 

I'll keep you posted.