Any Fibro sufferers here? Let's chat.

I know this really isn't too much related, but I am looking for some advice, I dunno where else to turn. I'll flair this as a community discussion. Not looking for vendors names, merely certain medications. I will be capable of finding vendors on my own using the search function.

If you have fibro, you probably know that doctors aren't very helpful. I've been on an array of different medications of the years (non-narcotic, as they REFUSE to give narcotics).

I'm trying to find a drug that I can take during the day as a pain reliever while maintaining my job. It's bullshit that I'm told to pop 6-8 Naproxen per day, which does jack shit. Then also for night time as I have pretty bad insomnia and restless leg syndrome.

I experience tight muscles that feel like they've been pulled. The deep ache of all my glands swollen all over my body. The burning, tingling, cold pain of nerves overly activated. Long strings of shooting electric pain when the nerves flair up on a whole route. Stabbing pains that feel like organs protesting. Aching, dull, flu-like pains. Stiff, hard aches of joints inflamed. Sharp headaches. Hard, painful cramps of constipation. And the worst of all? The deep, completely-wrong feeling of my bones being forced apart from the inside....like the marrow is expanding slowly. It is by far the worst. Not just because it's horribly painful but because it seems to make my body and mind think I'm dying...the anxiety that accompanies it is terrible. But overall...I think the worst is that it's constantly changing...each day different and differently disabling. It's the equation of bad, unpredictable pain over time. I've often told doctors that living with chronic pain is like having someone step on your foot brutally and then trying to continue a conversation. At first it's hard, but you start to get used to it. But then just as your foot goes numb, they lift their foot and step down hard again....over and over forever. Eventually, it wears you down and makes even talking difficult. And in my case, it's not just my foot...it's all over my body and it's never ever going away. And yet somehow I need to still live my lives.

Current Medications:

OMEPRAZOLE 20MG CAPSULES

CYCLOBENZAPRINE 10MG TABLETS

RIZATRIPTAN ODT 10MG TABLETS

ONDANSETRON 8MG TABLETS

NAPROXEN 500MG TABLETS

METHYLPHENIDATE 20MG TABLETS

VITAMIN D 50,000 IU CAPSULES

PROMETHAZINE 25MG TABLETS


Comments


[8 Points] wildwhales:

Hi there. I don't know how helpful this will be for you, but I feel compelled to respond. I too have fibromyalgia. I was diagnosed when I was 16, so I know how debilitating it can be and the havoc it can wreak on your life.

Doctors also didn't like prescribing me narcotics until I developed severe back problems; now they practically throw them at me. Unfortunately, they don't really help much. Opiates only relieved the pain somewhat, but they do absolutely nothing for the neuropathic pain like the burning, electrical shocks and tingling you describe. They also do nothing for the migraines or stabbing pains. For the most part, they aren't indicated in the treatment of fibro, and now I know why.

Have you ever tried any anticonvulsants like gabapentin or pregabalin (Lyrica)? I know some fibro sufferers that swear by Lyrica and say it changed their life, but I was never able to try it due to an allergy. I found gabapentin to help with the neuropathic pain and the tingling and burning down my legs, but had to stop taking that one too because I was allergic. Maybe these will help you? I found the gabapentin to offer great relief at night when my symptoms are the worst. Might be worth a try.

Antidepressants prescribed for chronic pain have always been a waste of time for me and done nothing to improve my condition, but that doesn't mean it'll be the same for you. I'm assuming you've already tried these by now, but if not they might be worth a shot. Hell, anything is when it comes to fibro.

Honestly, the only medications I've found to significantly improve my symptoms in my years of trying different ones are Adderall for the fatigue (which I see you're on methylphenidate), marijuana for the all-over deep body pain (I'm fortunate enough to live in a medical state now and have my MMJ certification), and suboxone. My pain management doctor recently prescribed me suboxone for chronic pain instead of opioid dependency, and I'm surprised by how well it works. It relieves the pain to the point where I can ignore it and go about my daily life with minimal irritation. It's been a godsend for me so far, so maybe it'll help you too. I know it's hard to get prescribed it for anything other than opioid dependency, though.

In sum, I'd recommend trying out anticonvulsants if you haven't already, and suboxone if you can find someone that will prescribe it. I've tried seemingly just about every medication there is to try for fibromyalgia, so if you have any questions feel free to ask and I'll be more than happy to answer. I'm sorry if none of this was helpful for you, but in any case I wish you nothing but the best and hope you can find some adequate pain relief soon. You deserve it.


[3 Points] HonkySpaceship:

I'm by no means a doctor and don't hav fibro but I do have a degenerative bone disease that's pretty painful on a daily basis and I'll share how I get through that after many doctors and years of trial and error, I hope it helps. I figured if I had kids this could help them too if they ended up getting the disease so they might not have to go through years of different drugs and constantly asking if they are helping, hurting, or doing nothing.

First off, I get a lot of shitty physical side effects from methylphenidate. Some of those side effects you mention as part of your symptoms. I assume the symptoms are a result of the fibro but I don't think it's unlikely they would be exacerbated by the methylphenidate comedown. That said, another commenter mentions how he/she also has fibro and takes adderall for the fatigue. I tend to find adderall leads to less of the nasty side effects but I think it is still worse for me than being constantly fatigued. That said, I still take adderall about 1-2 times a week depending on how much of an issue it is climbing out of bed in the morning. I found that more than twice a week makes me feel shittier overall and then the adderall begins to work less effectively. Also, fuck coffee and cigarettes.

To actually answer your post, I use opiates and cannabis to cope with the pain. Opiates make the parts of my body that don't hurt, feel great and cannabis helps me be content with the pain and also brings my appetite back from the addy and opiates. I Vape my weed at home, cap the vaped weed and eat it in the morning like a vitamin. I find decarboxylation brings out the more medicinal benefits but I originally started doing this simply so I could feel the effects at work. I have a wax pen as well that I use to load of with shatter but I find I prefer to eat the vaped weed in the morning and go to work that way. I'd steer of opiates if you can. They are nice in that they take all of your problems and pain and fold them up into a little package of just one problem - when can I get some more but that's not necessarily a good thing.

The addiction is a beast in itself but I've been working with this regimen for the better part of the passed 5 years. There is certainly something to be said about not crying yourself to sleep due to pain, and having a reason to wake up in the morning, even if that reason is just to eat some opiates. I think about this idea a lot and realize that sure, I actually get up to go to work to make money to support my wife, family and the decent living I've become accustomed to but I would be lying if I said the first thought in my head when I wake up every day wasn't, "oh god I feel shitty, I can't wait to not."

I have a cousin with the same issue as myself who swears by cocaine. That shit sorta helps me as well in the pain department but wears off much to quickly and often I feel worse than before it. He works from home so I guess he has less of an issue busting out a line whenever he needs though.

I hope some of this helps.


[3 Points] Clix828:

[deleted]

What is this?


[2 Points] Lucid_Enemy:

speaking from a chronic pain patient to another... you dont want to go down the narcotic route... I suffer with lower back pain (actual bone on bone pain not BS pain like some people say) you really dont want to go down the narcotic route it leads to worse pains I recently lost my parents health insurance and have had to go on public assistance my insurance doesnt cover half of my pain medication that I NEED... you know where that got me? heroin... I dont use H like many people do to get high and nod off (granted the euphoria is nice) I use it as a medication but I can tell you W/D from it is the WORST doctors understand pain all too well... its not a matter of a CURE but a MANAGE they want to get you to a 5-6 on the scale because thats the best narcotics can do for you.. P/T if you can fit that into your busy life is helpful. I did P/T for a little bit and they give you a piece of paper with excersizes that help me I do them every morning when I wake up and they help me that with taking baths (I a man, take baths with epsom salts) I can tell you its helped me get to a point where I want to just try again for the 4th time to quit opiates and see how it goes... anyway thats my 2 cents man message me if you need any help with what to tell your doctor to get pain meds (iv become a pro at it and im not proud of that however I understand it would be used for good not evil)


[2 Points] NegroKneegro:

That's why you should eat your spinach.


[1 Points] sapiophile:

I'm an herbalist, and there's some herbal stuff that's likely to help moderately, but is unlikely to give complete relief - but it may help for some of the more "interesting" symptoms. Combined with the meds, it might get you nearly back on the rails.

Note that this comment is not medical advice and should not be acted upon for any purpose whatsoever without detailed consultation from a qualified health practitioner who knows your case completely. Herbs can have serious side effects, contraindications and interactions with other herbs and pharmaceutical drugs. This is simply an invitation for further research on your own part, for educational/informational purposes ONLY. Please don't sue me.

  1. Skullcap & Baical Skullcap (Scutellaria spp.)

  2. Jamaican Dogwood (Pisidia piscipula)

  3. Black Cohosh (Cimicifuga racemosa)

  4. Lousewort AKA Pedicularis (Pedicularis spp.)

  5. Turmeric (Curcuma longa) - as a high-potency standardized extract (400mg curcumin[oids] per dose or greater)

  6. Tulsi AKA Holy Basil - as a high-potency standardized extract or a VERY strong tea

  7. Reishi or Ling Zhi mushroom (Ganoderma tsugae or G. lucidum) - as a well-prepared extract from a reputable brand

  8. Milky Oat/Oatstraw (Aveena sativa)

I'd also look into getting tested for Lyme disease and other tick-borne illnesses including Anaplasmosis, Babesiosis and Ehrlichiosis (if in North America - if elsewhere, test for a complete panel of the local tick-borne illnesses).

If you do find anything that helps, I would be very eager to hear about it, as I have met others with very similar cases to yours, but have not had the opportunity to work with their treatment or diagnosis in any way. I know that it's a long shot, but if you could remember this - even years from now - any information that you might learn would be enormously appreciated.

I wish you all the best in finding relief, and you have my support in whatever way I might be able to offer it to you.


[1 Points] None:

[removed]


[0 Points] IngrownHairs:

What else do you eat besides those pills listed? That will really complete the picture.

Naproxen is an NSAID, which is just a non-steroidal way of suppressing the inflammation your body is producing in response to some underlying cause, which is the real truth to your fibromyalgia. Taking lots of NSAIDs can cause many different problems, that in the end will only worsen your suffering. It can lead stomach ulcers and many other gastric complications later on in life, in addition to your current ones.

My sincerest recommendation: check your diet. All of that pain you are suffering is due to massive systemic inflammation and no pill can cure that, only suppress. You may need a radical lifestyle change to cure you.

The Vitamin D is good, so I would keep that.