Diagnosed today, give me all the tips and tricks.

[TheGibbonshouse]

Hey! I'm TJ and I was diganosed with Fibromyalgia less than an hour ago after what feels like years of fighting a system that wasn't made for us.
I am not new to having a chronic illness as I was diagnosed with Hypermobility Spectrum Disorder 10 years ago.
I guess I'm just looking for all the tips, tricks, pain management and other help you can offer! I am open to anything, though I much prefer natural relief stuff.
Thanks!

 

[Auriel]

Hi @TheGibbonshouse ,
, welcome to our forum, it makes such a difference having someone to empathize with, (it seems lately though when I talk about my fibro that people know more about it, and know someone who's got it too) as for tips it's usually a case of trial and error (from GP) with medications and while we're all different (what helps 1 might hinder another,) good sleep i find helps me (poor night's sleep and it's guarantee fatigue and bad pain next day) eating a better diet I've noticed less pain (less gluten, wheat, sugar, caffeine,) seems to help, but as with medication, what works for one might not make a difference to another, I take gabapentin, (I have to, the pain is too bad otherwise) I have the chronic fatigue too, I also drink green tea, (I think it's helping with some weight loss and it helps with my leg nerve pain)anyway welcome again, (hope to learn more about you,) and hope you stay with us a long time (or forever )

 

[BlueBells]

Hi @TheGibbonshouse , Welcome to the forums

Best tip I can give you is to freely interact on here, and that helps so very much. We share what does or might not work for us, and as @Auriel said, what works for one does nothing for another.

Again, Welcome

 

[Kitkat57]

Hi there, I have just joined the fibro guy just key it in on google,they have videos and stories of real people recovering from fibro and hypermobilty.
I have paid for 1 to 1 sessions but they only take 12 people a year, however they have an online course for £25 that you could follow yourself, and there always there for you if you need help.
These 2 guys are from tyneside and have had chronic pain, and now they don't they know every muscle and bone in the body and know what there talking about, it's very interesting how they have worked out. Certain exercises to get you mobile again. Tbh I would pay anything to get rid this horrible pain , makes you feel miserable, sometimes scary and feel disabled. Take a look if you like it pass it on we need to help as many fibro sufferers as possible good luck

 

[Frizzybee]

Welcome TJ. I've had Fibro since 1986 and I ran a Fibro and CFS support group for the Arthritis Foundation for 14 years. Since you prefer the natural things (so do I), if I could recommend one supplement, it would definitely be magnesium, and plenty of it, in several divided doses throughout the day. My next choice would be a good B Complex with the usable forms of the B vitamins like P5P rather than pyridoxine for vitamin B6, Methyl Folate rather than folic acid for vitamin B9 and methyl cobalamin rather than plain cobalamin for vitamin B12. People with Fibro often have a hard time converting the cheaper forms into the usable ones. I studied to be a Naturopath when I realized many of the medications had side effects that were as bad as the illness, or at least the did for me. Having said that, I do have to take several drugs to handle symptoms that might otherwise do me in, but I don't like it. I know it hurts to exercise, but if you can just make sure to get some mild movement, like walking, stretching, or swimming most days, it can really help with pain and sleep.

 

[sunkacola]

TJ....there is a post at the top of the General Discussions forum that has many suggestions for managing fibromyalgia. Perhaps something there will be helpful to you.

 

[Anabrock]

My top tip: Learn to nap.

I saw a video on YouTube by a doctor who did just that to help him get through 12 hour shifts. The main point was that naps must be either 25 minutes long (so you don't go into the full sleep cycle) or 90-120 minutes long depending on your sleep cycle (that's one revolution of the typical sleep cycle). Waking up in the middle of deep sleep can make you feel worse.

Napping in our culture isn't typical so we need to learn to do it. What he suggested was lying down in a darkened, quiet room and set your alarm. At first you just shut your eyes and try to relax your joints as much as you can. Let your mind drift - don't worry if you actually sleep, that's not the point at first. You may fall asleep for the last minute, or not at all, but if you do this regularly your brain will eventually get the message that it can fall asleep now.

I'm not always successful, but I spread my work out through the day so that I have half hour breaks between clients, during which I will have 'naps'. Sometimes I get 4-5 hours sleep due to pain and insomnia and this napping helps me survive the working day. It isn't so long that it upsets my sleep at night, and even when I don't actually sleep in my nap, the relaxation helps. I've been experiencing chronic fatigue for much of my adult life so this skill has made a huge difference. Try it!

 

[sunkacola]

My top tip: Learn to nap.

Wish I could take this advice! But I have actually never taken a nap in my life, not even when I was a small child, as I was born with chronic insomnia. The only time I have slept in the daytime has been if I were very ill. I keep hoping that one day I will suddenly be able to take a np, but I doubt it will ever happen.

 

[Anabrock]

Wish I could take this advice! But I have actually never taken a nap in my life, not even when I was a small child, as I was born with chronic insomnia. The only time I have slept in the daytime has been if I were very ill. I keep hoping that one day I will suddenly be able to take a np, but I doubt it will ever happen.

Just wanted to clarify that it's not about being "suddenly able to take a nap". It's a process to help you learn, eventually, to nap. Sometimes I succeed, mostly I lie down for 25 minutes relaxing.

 

[sunkacola]

Just wanted to clarify that it's not about being "suddenly able to take a nap". It's a process to help you learn, eventually, to nap. Sometimes I succeed, mostly I lie down for 25 minutes relaxing.

Yes, I understand that. But still, no matter what I have done or tried, my body absolutely will Not sleep in the daytime unless I am very ill. I gave up on trying to "learn" how to do it, and instead I focus on trying my best to make sure I get enough sleep every night. Which, mind you, I would not be able to do without the help of medication. Just how my brain is wired, I guess.

 

[Anabrock]

Yes, I understand that. But still, no matter what I have done or tried, my body absolutely will Not sleep in the daytime unless I am very ill. I gave up on trying to "learn" how to do it, and instead I focus on trying my best to make sure I get enough sleep every night. Which, mind you, I would not be able to do without the help of medication. Just how my brain is wired, I guess.

Ah well we're all different. Hope you find stuff that does help.

 

[sunkacola]

Ah well we're all different. Hope you find stuff that does help.

I already have. I have taken medication for the past 30 years that allows me to sleep every night. I have never had side effects from it, and I love it. Of course, just like anyone, sometimes I sleep better than at other times, but chronic insomnia is no longer a part of my life. And if I can't sleep in the daytime...eh, well, that's no big deal to me at all.

 

[30 plus years]

@sunkacola Would you mind sharing what the sleep medication is?

 

[sunkacola]

@30 plus years it is not actually a sleep medication as such, but a tetracyclic antidepressant called Trazadone. It has never had an effect on my depression, actually, except in so far as it helps me to sleep and of course without sleep it is far more likely for a person to be depressed. In my case, all it has done is make me sleep, and I have had to take other medications for depression. It is sometimes prescribed to help people sleep, as it was for me, because it has a tendency to make a person drowsy.

 

[30 plus years]

@sunkacola That's amazing the same medication has been effective for so long, but I'm glad for you it is! I was put on Trazadone way back when I was first diagnosed. Truthfully, I don't remember if it was for depression or sleep. There have been a lot of medication changes since then!

More recently I've been taking Tizanidine (muscle relaxer), which sent me off to sleep nicely. After a day of struggling with pain, I would practically look forward to it. But a couple of nights ago I had the worst insomnia despite taking it. Hoping that doesn't continue...