Long QT Syndrome and Fibromyalgia

Status
Not open for further replies.

rbristow

New member
Joined
Jun 28, 2021
Messages
3
Reason
DX FIBRO
Diagnosis
06/1997
Country
US
State
WA
Is there anyone out there with long QT syndrome and fibromyalgia? Besides insomnia, anxiety, muscle twitches, buzzing, now I have electric shock and stinging prickly and sensations all over my body. People without my heart arrhythmia would generally take Cymbalta or Lyrica, but according to crediblemeds.org I should try to avoid those medications and all SSRIs and SNRIs and Gabapentin. What is left for someone like me?
 
I get that prickling sensation. Two things can help. The most helpful for me is a TENS machine. And sometimes cold water or an ice pack helps as well. Never heat, which makes it worse. There is no medication that I have found that does anything to help with this.

I have tried a lot of things to deal with fibromyalgia and had some success with managing depression, anxiety, and fibro. I put all my best findings into a post you can read. there are a lot if ideas there, and something in that post may be helpful to you if you start experimenting. I fully support your not using medications if you possibly can. They mask symptoms but do not help your body. If you have any questions after reading my post, feel free to ask.
 
The tens machine helps with the stinging prickly electric shock feelings I’m getting all over my body? It truly feels like all the symptoms are more than I can bare. Sometimes it feels like I’m losing my mind. Nothing helps me sleep better so I have a vicious circle with no way out.
 
I know it sounds kind of counter-intuitive that a machine that gives gentle electric stimulation would help with that, but for me at any rate it does. It also helps with other things, like certain kinds of pain.

People often think that their symptoms are more than they can bear. And it definitely feels that way at times, especially when you are first experiencing them. I felt like that and so I took heavy duty pain meds, opiates from my pain doctor, to handle it. But eventually I found that those are not necessary if you experiment and find other things that help you.

I do heartily recommend that you read that post of mine. there's a good chance you will find something in there that will help if you try a bunch of things. The one thing that makes something that seems unbearable become bearable is if you can start to feel empowered in the situation.

Unbearable is something you feel when you feel helpless to change anything. Once you realize that you have it within you to make things better and to explore and experiment to find those things, it no longer is unbearable because you find out that you are not powerless. You really can do something about it. Not to the point of a total cure, I know.....but anything that helps is a big thing, right?

There IS a way out of the vicious circle. But no one can do it for you, not the doctors and not I. No one can tell you exactly how to get out of it because we are all so different. But once you start taking charge of your own health, you will find that things can improve, and then you are out of the vicious circle.
 
I read your post last night before I posted to my question. You have lots of helpful information but to be really honest I’m already doing most of that. The only thing I haven’t tried is the tens. My heart arrhythmia makes messing around with herbs and other medication‘s very difficult.
 
Hi rbristow,

I'm not sure what other medication options a doctor might propose in this situation, but I'd suggest taking comfort in knowing that while the commonly prescribed fibro medications do help some people, those people are sadly in the minority. For most, these kinds of medications cause more problems than they cure - this is part of why fibromyalgia is such a challenge to treat!

One thing that I spotted, having just had a Google, is that I can't see any contraindications for Low Dose Naltrexone with QT syndrome - that could be something to research and talk to your doctor about. I can't recommend or advise on that treatment personally, as I've never tried it, but it's been discussed here in the forum a few times.

The other thing I'd add is that I can't emphasise how much stress seems to play a part in triggering fibro symptoms. Often, we don't realise how stressed and triggered we are all the time when dealing with this condition - that was certainly the case for me. We feel pain, and that triggers a chemical stress response in our body and brains that in turn triggers more pain, plus of course the fog and fatigue that like to keep those sensations company. Learning how to break that cycle can - as Sunkacola said - be transformative, so try to assess where you're at in that sense. Whenever you feel pain, keep reminding yourself that it's not a threat - it's unpleasant, but it can't actually harm you. Read up on the sympathetic nervous system (responsible for fight/flight/freeze in the body) and the parasympathetic nervous system (rest/digest/calm) to understand the chemistry and mechanisms of stress. I also recommend reading psychologist Paul Gilbert's theory of the three emotional systems - that all helped me understand what was going on in my brain better, and how to flip the switch! These responses are like muscles - the more we can flex the ones we want, the easier things will get.

I see you've had fibro for a long time, and don't want to sound patronising - I know this is a nightmare condition to navigate. But, I really hope you find the right resource to ease those new pains soon.
 
I know it sounds kind of counter-intuitive that a machine that gives gentle electric stimulation would help with that, but for me at any rate it does.
Looking for things for a friend with disc/nerve problems I saw TENS recommended, was a bit surprised, but anything's worth trying & it's cheap & easy to get. If the problem is tough enough, we can be brave enough. :cool:
My heart arrhythmia makes messing around with herbs and other medication‘s very difficult.
My experience with symptom tracking and generalizing (incl. blood pressure) is that calming/relaxing nerves & muscles are good for both. So firstly I'm pretty sure that supps & herbs won't be much of a problem, secondly it's likely that they'll help both.

Checking by looking up "supps for arrythmia", I can immediately find that most herbs & supps are also good for fibro pain, as well as anxiety, inflammation/autoimmune and general health: L-carnitine, magnesium and rhodiola, fish oil; combining taurine with magnesium malate (best for fibro along with glycinate), curcumin/turmeric (newsmax), whilst bottomlineinc recommends checking the levels esp. of magnesium (& potassium), ratio between omega-6 and omega-3 (EPA), the amino acid homocysteine. (The two most common deficiencies in patients with arrhythmias are magnesium and EPA. And taking - similar to the above - fish oil (& other omega 3 sources) (but medically supervised cos of blood-thinning, same goes for:), lumbrokinase, an enzyme similar to nattokinase (which is similar to serrapeptase, which I take cos it's anti-inflammatory & for pain etc.), magnesium, potassium, B6, B12 and/or B9 if your homocysteine levels need to get reduced.
Lumbrokinase and also hawthorn are the only two which probably have no fx for FM, but then they also have no sfx for FM either.

Example: My GP recommended rhodiola rosea (rose root) for my high blood pressure (in my case due to the fibro pain), so I got some, but it didn't seem to help, so I had to take blood pressure meds. Getting more and more fibro-trigger/symptom control from supps I realized my blood pressure was getting too low, so was allowed to reduce and then stop the meds. Then I started realizing most of them, relaxing muscles, are good for blood pressure, and that on the other hand rhodiola is good for muscles relaxation (as well as anxiety), also that my product contains magnesium (carbonate) and vitamin B1, all good for both.
The only thing I "regret" is that I didn't know anything about dosage a year ago and just took one a day, altho 3 a day would have been OK, always carefully looking for possible sfx as dosage increases - maybe that'dve made life easier faster...
Like arrhythmia, blood pressure and also fibro is also a muscle, nerve & partly anxiety problem (and hawthorn is good for both), maybe also something inflammatory (hawthorn is good for that too) so it's not surprising that supps that help it will help fibro and not make it worse.

So I'd encourage you not to fear 'messing around' with little risk, rather than suffer.... - just ask your cardiologist/GP to make sure and reassure... and positive messing around means starting with small doses and increase while watching fx and sfx....
 
Last edited:
Status
Not open for further replies.
Back
Top