I wish I could tell you my patients with fibro who tried creatine, or ribose reported significant improvement, but that hasn't been the case. Body builders and weight lifters will tell you certain supplements help them, but I've not seen any convincing medical data that supplementing creatine helps the muscles in any way. Nor have I seen that people with fibro lack or need extra creatine.
If a person is eating properly and getting key amino acids from proteins (building blocks for muscles), I believe the muscles will repair themselves and get bigger in someone who exercises regularly or lifts weights.
So eating properly and making sure one has a balanced diet with proper proteins seems to be the key to repairing/restoring our muscles and other body parts.
You've certainly done your research and have educated yourself on the pros and cons of using benzos long term. Everyone's situation is unique and the goal is always to optimize one's quality of life and making sure the benefits of any treatment outweigh the risks.
Klonopin is often used as part of fibro treatment, and dosing requirements are based on each person's response. Doses may need to be adjusted over time to optimize therapeutic benefits.
Doctors' comfort levels with meds such as Klonopin are highly variable, as you've discovered. If a specific doctor is uncomfortable with prescribing a certain medicine or a certain dose, it does not mean the medicine is dangerous or ineffective. It does not mean that one is an addict.
Treating fibro is always a dynamic process requiring an effective doctor-patient relationship. Not surprisingly, one of the most challenging times for a fibro patient can occur when one has leave a successful doctor-patient relationship, for whatever reason, and try to find a new one.
I think one of the best times to explore new treatment options is when one changes doctors. It's a natural process: you and your new doctor getting to know each other, your fibro and your treatments past and present getting reviewed, and your future course being planned. I hope you can work well together with your new doctor.
This site has much helpful info about different treatments that you and your doctor may be able to explore.
We always hope a new medicine trial will be helpful for our fibro symptoms, and not cause severe side effects. Sorry to hear your Savella trial isn't going well. Keep working closely with your prescribing doctor regarding your responses and reactions to the medicine.
If one of my patients used words like intense, unbearable, scary, and horrible to describe a fibro medication's side effects, I would be advising her/him to discontinue the drug. Your doctor can advise you what to do in your specific situation.
Sorry you are having such a tough time with the pain. It's always frustrating when patients have spine surgery and the severe pain persists, or a different type of bothersome pain develops.
Spinal cord stimulators are an option for some people. One of the indications for this procedure is failed back surgery syndrome. The stimulator works by delivering small electrical shocks to spinal nerves which block the body's internal pain signals from getting through. So it works like an implantable TENS unit. Even though fibro pain is felt to be due, in part, to hypersensitive central nerves, that doesn't mean one cannot benefit from therapeutic electrical stimulation.
Therapeutic electrical stimulation (ie electric stim, TENS, spinal cord stim) is not contraindicated in fibro...quite the opposite..it's often helpful. If your doctors are recommending a trial of a spinal cord stimulator, you may want to give it some thought. It's done as a trial first (temporary spinal cord stimulator), and if it works, a permanent one can be surgically implanted.
My state of Ohio has not legalized medical marijuana use so I am not able to provide any thoughts. There have been various community discussions on this topic that you may want to review.
There are no studies I'm aware of looking at or linking fibro to a specific fungus. Certain types of fungal infections of skin or toenails are not likely to cause or affect fibro, probably because they are localized and treatable.
But I've seen how generalized infections, esp those that are hard to get rid of or can be chronic, can trigger fibromyalgia. Viral infections (ie Epstein Barr/mono), bacterial infections (ie Lyme's, a tick-borne disease, Chlamydia) and even yeast (Candida) all have been implicated in causing/triggering FM in some people.
As Nancy B already mentioned, Candida is one such yeast/fungus that may overgrow in fibro and aggravate the fibro. Perhaps the reverse is true as well, that is, some with candida overgrowth problems may be triggered to develop fibro.
Candida is usually referred to as a yeast when it is behaving properly in our intestinal system. It is an important part of our normal flora, friendly organisms, that aid in the digestion process, utilization of certain vitamins, and other functions.
If the intestinal environment changes, ie from an antibiotic that wipes out the friendly bacteria but spares the candida, the candida may overgrow and become more aggressive. It can start releasing a toxin that causes widespread skin rash, fatigue, pain. The overaggressive candida changes itsView Thread
Thanks for sharing. As you've seen, you are not alone in having debilitating fatigue. If your fatigue has recently progressed or worsened, you should make sure your doctor is aware of this. We don't want to automatically blame our fatigue on fibro. Sometimes other medical conditions develop or worsen that cause fatigue. If one already has fatigue from fibro, another problem may result in worsening of the overall fatigue.
Sorry to hear of your difficulty finding something that works for your fibro. It sounds like your different doctors and you have tried different strategies and you had specialized work-ups to try to figure out what may help.
I understand your frustration. I have patients who I've tried different meds and did different work-ups (such as looking for allergies, or certain viral infections), but without any improvement overall. We all feel bad in this situation as the goal is to do better. Testing that turns out to be negative can be both good and bad: good because no abnormalities were found, but "bad" because it didn't result in new treatment options.
Please consider that the evaluations you had were done to look for specific fibro-related problems, and if they were negative, that's actually a good thing.
Savella is approved for treating fibro pain, so it is certainly worth considering a trial. Your PCP could discuss this option with you and determine if you are a candidate to try it. As you know, there is no magic medicine that eliminates all fibro symptoms, so hope that you get a therapeutic response that helps you manage better with Savella or any other treatment you may try, even though you may still have pain.
I truly hope you can find something soon that helps your fibro. You are certainly due for something positive to happen! Good luck.
No pun intended wanting to pick my brain about Brain Core Therapy?!
I hadn't heard of Brain Core herapy but after I did an online search, it's clear to me that this is cognitive biofeedback, or neurofeedback therapy. This treatment modality have been around for a number of years.
Brain/Cognitive biofeedback therapy has been described as helpful in some with fibro and other conditions such as ADD/ADHC, brain injuries, depression, anxiety, to improve one's fatigue, alertness, and concentration. Brain waves (EEG) are monitored and biofeedback training is done to select out the favorable ones.
I have had mixed results with this type of treatment for my fibro patients. I wish I could figure out who has the best chance of responding to this modality. I hope you have wonderful results if you do decide to try it.
There's no reported relationship between fibro and A-fib. People can have both conditions. People can have thyroid problems, mitral valve prolapse, medicine side effects, viral infections, sleep apnea, and stressors that can be seen with either fibro or A-fib, or both; but no direct relationship exists between having fibro and getting A-fib, or vice-versa.