A few weeks ago I opened up the door on Facebook and said that you could Ask Me Anything. And ask away you did (thank you!). I realize I don’t spend a lot of time here on the blog talking about myself and often the things I’ve shared about how I’ve improved myself may have been shared before many of you found your way here. I think these questions might help clarify some things.
- Do you live in a state that has legalized medical marijuana and if so have you tried it?
Unfortunately, I do not live in a state that has legalized medical (or any) marijuana. However, I have tried it and it can help, especially with the cluster headaches that I get. In fact, it’s the only thing I’ve found that did help. I do use a CBD oil muscle rub from Fay Farm. It contains only CBD oil (which is legal in most states) and it has helped with some of my pains immensely. I use it often on my neck and shoulders where I tend to house a lot of my pain.
- How do you deal with the guilt when you have to say no? I can do it well with certain people, but saying no to my children kills me. What do you find helpful?
This is difficult because I find that I get guilt either way. I still say “yes” more than I should and I feel guilt when I do that because I know I shouldn’t. Yet, when I say no and I know someone is disappointed I feel guilty, too. I have to remind myself that I’m doing the best thing for ME in the long-term. It may not make me or them happy right now but by saying “no” to something now I can do more later, more of what I really need to do rather than just doing things to make others happy. And, if I have no energy because I’m over-committed myself then I can’t do anything. This is a common issue for me, and I’ve written on this topic a few times just because of that.
- Letting Go of Guilt
- The Guilt and Blame Game
- Learning to Say “No”
- Sometimes “No” just isn’t an option
- How did you find a good rheumy who would listen to you?
This is one place I’ve just gotten really lucky when it comes to doctors. Before I was diagnosed I’d become friends with a woman who runs our local Fibromyalgia support group. She’d told me about this NP Tim at one of the Rheumy offices in town. Most of the doctors in that office refer their Fibromyalgia patients to him and he knows more about Fibro than probably any of the Rheumy’s in town (because that’s all he works with). He’s actually in the process of getting a PhD in Nursing right now focused on Fibromyalgia. Because I knew about him I made a point of getting in to see him and I’m glad I did. If you need a good Rheumy and you in Huntsville AL go to Rheumatology Associates of North AL and ask about getting a referral in to see Tim Bynum. Not all the doctors in that office refer to him, but most do. If you don’t live in this area and you are struggling to find a good doctor, find a support group, or just do whatever you have to in order to connect with other Fibro patients (or Lupus or whatever you are dealing with) and ask who they use (and more importantly who they are happy with). Sometimes it’s not about finding a Rheumy but just a good GP that will listen and treat your Fibro.
- Did you gain weight because of Fibro ?
Gawd yes! I gained about 40 lbs thanks to the variety of Fibro meds and antidepressants that I ended up on during those first couple of years. Luckily, I lost that weight just as fast (faster actually) when I found what has helped for me.
- I’m trying to come off meds because of weight, but I’m in so much pain, and I’m scared as h… I’m not going to be able to move, I’m so lost! Wa’t to rid myself off meds, what is the best way to go?
Work with your doctor and try to find what will help you first. I had to make the diet and lifestyle changes first and then I was able to reduce most of my meds and come off others.
- What have you found to be the most helpful in reducing Fibromyalgia symptoms?
Diet and lifestyle changes. By the end of 2011 I was willing to try anything and I finally did. For me that meant a major overhaul on my diet. I got rid of gluten entirely, and I avoid processed foods, dairy, and eggs. The gluten and processed foods seem to have the most impact on my Fibro symptoms. The others impact my IBS. My fatigue levels dropped dramatically and my energy improved when I made these changes. My pain levels also decreased and I no longer have real flares (I’ve had a couple following other issues -ie. surgery, hurting my shoulder, eating gluten). Typically if I have a bad day it’s just that a bad day (low energy) but nothing like what it was.
Additionally, I’ve learned a lot about pacing, and managing my stress levels and my time. I avoid over-committing myself as much as possible. I try to pay attention to what my week looks like and plan accordingly. I’ve learned to say “No” as much as possible (although like I said it’s not always easy and sometimes I don’t manage it). I take days to just rest (usually Sundays) and do very little except relax.
- What medications do you take?
The answer to this changes week to week it seems. However, if the answer is just based on Fibro the answer has stayed the same for several years now. I take Gabapentin for the nerve pain (without it I feel like I’m plugged into a socket and get really anxious feeling). I take tizanidine to help me sleep and to generally relax my muscles at night. I take Vit D and Magnesium and I take FibroCane Daily supplement (which is a multi-vitamin and herbal supplement). What keeps changing are my other meds, things for migraines (we’ve not yet found anything to control the chronic migraines that doesn’t have some other significant side effect). I take hormones to control endometriosis, and I take a few other supplements (eg. iron).