The magic bullet in my fight against fibromyalgia
By Yuki
@yukimori (10145)
United States
April 7, 2018 3:28pm CST
I have some reservations about posting this, because I feel like I'm going to jinx myself... but here goes anyway.
I've been living with fibromyalgia since late 2011. For those of you who aren't familiar with it, it's a disorder that causes widespread chronic pain in the body along with other symptoms like brain fog and fatigue. It's a lifelong condition without a cure at this point, and it's not very well understood even by medical professionals.
Anyway, I've tried a ton of different things over the years. Gabapentin worked but made me psychotic and suicidal within a month. The prescription painkillers have been hit or miss. The supplements my neurologist recommended for headaches have helped a bit, and taking turmeric capsules did wonders for boosting the effectiveness of the things I was already taking.
The big problem for me over the years hasn't really been the pain levels, though, but the overwhelming fatigue... and the doctors haven't really been able to give me much input on that, aside from suggesting things like trying to get more sleep. That really hasn't been helpful given that getting quality sleep is often difficult for people with fibromyalgia, regardless of how long we spend asleep.
My biggest breakthrough on that front has been thanks to a random post on Reddit. The person mentioned that they have a MTHFR genetic mutation that interferes with the way the body processes specific B vitamins... basically, the body's cellular energy pathways don't work like they should. To combat this, they take methylfolate supplements.
After a bit of research I decided it was worth a shot and ordered a bottle of 1000mcg supplements; they came, and the difference within a few hours of taking the first one was remarkable. It's so weird to feel energetic and alert after muddling through life for so long. The downside to the supplements I chose was that they gave me migraines the first few days, but adding a 1000mcg vitamin B-12 supplement has taken care of those.
That's probably the best $22 I've ever spent. I'm really hoping that this keeps working so well... it's nice to feel mostly "normal" for a change.
11 people like this
10 responses
@epiffanie (11326)
• Australia
28 Apr 18
Thank you for sharing this .. ..I used to take vitamin B-12 and I remember that it eased my pain.. I stopped using it when my doctor said I was not lacking in B-12 .. I hope it continues to work for you..
@hereandthere brought me here ..
..
2 people like this
@sprite1950 (30452)
• Corsham, England
7 Apr 18
That's great news. My mother suffered from polymyalgia which is slightly different in that is an inflammatory condition of the muscles which causes pain and fatigue. It was controlled with steroid tablets. If you have found something else that works for you it could change your life! Fingers crossed
1 person likes this
@sprite1950 (30452)
• Corsham, England
8 Apr 18
@yukimori Is your fitbit accurate when it comes to sleep. I have a knock off one and although it's pretty accurate with steps I don't think it is with sleep. It will tell me I have been in a light sleep when I know I was awake but it seems to record deep sleep ok.
@yukimori (10145)
• United States
8 Apr 18
I definitely have mine crossed! I'm not feeling the benefits as strongly today and I suspect it's going to go hand in hand with how well I sleep. I only got about an hour of deep sleep last night according to my Fitbit and I'm feeling it today.
1 person likes this
@akalinus (43209)
• United States
7 Apr 18
I take Gabapentin for neuropathy but my doctor does not want me to take it. There is nothing else to help but he does not care. I can't take N-saids because of kidney issues.
Be careful with turmeric. A friend recommended it for pain. It was helping but it caused me to have internal bleeding and I have to stop. There are other side effects also that you should search.
1 person likes this
@yukimori (10145)
• United States
8 Apr 18
NSAIDs can cause a lot of problems.
The turmeric seems to be working pretty well for me so far. I've been taking it for several months with no real issues. The only problem I've had with it has been a bit of digestive trouble when I decided to try taking two capsules a day instead of just one.
@Starmaiden (9311)
• Canada
7 Apr 18
Fibromyalgia inflicts many people. I have a few friends with the disorder and they say the pain is excruciating. Hope this continues to work for you. I'll mention this to my friends and see if they try it if it will work for them also.
1 person likes this
@yukimori (10145)
• United States
8 Apr 18
I wouldn't say mine is excruciating, but my pain tolerance is ridiculous. I'm the lunatic who was crouching on the floor a few hours after my last C-section to take pictures of my kids, if that's any indication.
For me it's more of a constant presence that just wears on me. A friend described it as being slowly squeezed by a boa constrictor over the course of the day, and that rings pretty accurately to me.
Hope your friends are able to benefit from it if they give it a shot!
1 person likes this
@LilyBeBack (1994)
• United Kingdom
15 Apr 18
Amazing! I went through a phase that lasted a few months, about a year ago, where I felt at every moment like I was going to fall asleep. I was having to go to bed when my son had his naps and just hope that he would sleep for two hours so I could do the same and then keep myself awake till bedtime. I can't imagine how hard it would be to feel like that all the time!
I'm so pleased that you've found something
@yukimori (10145)
• United States
8 Apr 18
I rarely feel like I've gotten enough sleep, regardless of how long I've slept for. I've been using a Fitbit to track that stuff for almost a year, and it seems like I'm always coming in well under the average amount of deep sleep that people in my age range get each night.
Mornings have been a bit easier the last few days. I don't have to wait for the pain pills to kick in just to feel like I'm able to get out of bed, which has been really nice.
1 person likes this