How often do you pause to question how your treatment protocol is benefiting you? How often do you think about the ways in which it isn’t? It is great when we find something that helps us to feel better but the unfortunate truth is that things can change. Just because something helps us in the beginning, it does not mean it will continue to benefit us in the long-term. The frustrating thing about fibromyalgia is that we often have to take a dynamic approach to managing our symptoms.
Before I go on, I think it is important to say that there is no right or wrong when it comes to treating fibromylagia, so long as what we choose is of benefit to us. We are all individual and therefore the approach to treatment has to been individual too. There are many options to choose from, both holistic and traditional. Ultimately, it is up to you and your doctor to decide what the best choice is for you. But often we have to be our own health advocates and be the ones to realise when things aren’t working out for us.
I have experienced this with both traditional medications and holistic treatments. In fact, it is the main reason why I have given up with medications. I’ll admit that I only have experience with two- amitriptyline and gabapentin- but what I went through with these was enough to put me off trying others. Amitriptyline turned me into a bit of a zombie and made functioning normally difficult. It also did nothing for my pain. I took it for longer than I should have because I clung onto the hope that a higher dose might help me. Gabapentin did help to dull my pain and seemed promising in the beginning. However, this benefit was sadly outweighed by the side effects I suffered from over time. My fatigue worsened and it made me feel unwell and nauseous. My fibro fog was also worse while I was on this drug, to the point where it actually worried me. It took time for me to realise my symptoms were being caused by the drug and not fibro. Sometimes it can be difficult to know and it’s easy to blame our illness as the primary cause. It wasn’t until after I stopped taking gabapentin that I realised the full extent that the side effects were having on me.
These experiences lead me towards the path I am following now, which has been far more beneficial to me. I have actually found pain relief that goes above and beyond that of anything I have tried previously. I truly feel like I am helping my body to cope with this illness, rather than simply managing symptoms.
What prompted me to write this post, however, was not reflection on my past experiences with medication. It was actually because I have recently made the decision to stop seeing my alternative and complimentary therapist. I began seeing her in November 2013 and have been receiving Bowen, Reiki or Reflexology on a regular basis ever since. I found many benefits from these treatments, hence why they formed a big part of my treatment protocol. However, more recently something changed and my body decided it no longer appreciated these treatments.
It was bizarre actually. The last two treatments (one of which was Bowen and the other Reflexology) caused me to flare. I felt like I was just getting over the first flare when the second treatment threw me into another. Why has this all of a sudden happened? I do wonder if it is something to do with where I am in terms of my recovery but the honest truth is I don’t know. However, it has made it clear to me that I can no longer receive these treatments. I can’t say that I won’t benefit from them again in the future but for now they are working against me.
I don’t want to put anyone off who is thinking of trying alternative therapies. By all means, please go ahead and do so. Please remember that I had treatments for around 18 months and saw benefit from them. However, my experience serves to prove my point about the need to regularly assess your treatment protocol. We need to be actively thinking about what is helping us and what isn’t.
Fibromyalgia takes up so much of our energy that sometimes we fall into a routine. We might not realise that things have changed and even if we do, it can be hard to find the motivation to try something different. This is especially true when you feel like you have been there, done it and bought the t-shirt. Believe me, I know that feeling. I tried so many different things before finding Vital Plan. I am thankful that this protocol is working well for me but, even so, I have had to play around and add in a couple of extra herbs at times to help me. It’s been about listening to my body and asking what else I can do to help support it.
The thing is, staying where we are when things aren’t working is doing ourselves a disservice. There is no point in continuing with a treatment unless it is helping us. Unless you try to move forward, you never will. Don’t let the fear of something potentially not working put you off trying as that will keep you stuck where you are. Be open to trying new things and be honest with your doctor about how things are progressing for you. If you are unhappy, be sure to say so.
Listen to your body, be guided by your intuition and don’t be afraid to change things. I don’t keep a symptoms diary, and I may talk about the reasons why in a future blog post. But I will ask myself each morning, “how do I feel today?” If I feel I am following a negative trend or if I feel stuck in a rut and I’m not happy about that, I will reach out and ask for help. I will also ask questions and I will do my own research. Be your own health advocate and don’t be afraid to try something new. It might just be the one thing that helps you live better with your illness.
What do you think?
Thankyou for this Fibro Geek I have shared your blog post because like you treatment protocol is often something I’m dealing with and keeping track of my needs is important but I only keep diaries of the serious changes so I can show doctors and consultants.
With us all being so different and it being difficult to find a treatment protocol to suit all it leaves the decision making to us, ourselves and our needs alter all the time. For example: My diet is simple because I feed my body what it asks for but I’ve spent years learning how to recognise it’s wants, also, when something is really off I can then recognise it is time to see the doc. However, like you say there is no right or wrong way the point is recognising that there is a need to vet our treatment protocols to begin with, especially if we’ve been taking a particular med for a long time because it may not be working anymore and be time for a change 😮
There are so many places to find advice about fibromyalgia these days, which is reassuring, but at the same time we don’t know the quality of the treatment advice that is being given to us. ie: heal all and cure all remedies for instance, which in desperate times when we feel no-one is listening or providing us with adequate treatments some of us fall into the trap of 🙂
I think it would be great if we could be looked after by a team of fibro specialists who help to guide us down the path we personally feel best for ourselves and have bi-annual reviews to help assess our needs. I find my needs change as the seasons do 🙂
Some of the best advice I have found has come from fellow fibromites/spoonies just like yourself 🙂
Wishing you wellness and send fibro monster fighting fluffie hugs to you 🙂
You’re welcome and thank you for sharing, I appreciate it. I think we definitely need to learn to become attuned to our own bodies, listen to what we need and be guided by our intuition- it is rarely wrong in my experience. A team of fibro doctors would be wonderful to have. I think it’s a downfall in our health system that we are essentially given prescriptions and left to get on with it. It really is up to us to actively go to the doctor and say when things aren’t working. There’s no real ongoing support.
Yes, absolutely. There is a lot to be learned from other people going through the same thing. Thank you 🙂
[…] via The Importance of Regularly Assessing Your Fibromyalgia Treatment Protocol ⋆ FIBRO GEEK. […]
great points. I think it’s important to remember that a treatment that helps us at one point may not help us later. The opposite can be true as well, just because something didn’t work before doesn’t mean it might not work (it might take longer than we gave it, or perhaps the body is in a different state than it was when you tried it the first time).
Absolutely!