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indiancyclegirl posted:
Hi everyone,
I am new to this site but have enjoyed reading some of your posts as well as the Spoon Theory and the paper on supplements for FM. My current issue, besides the constant pain in my joints and those darn trigger points, is the almost crippling fatigue. Yesterday I fell asleep at my desk at lunch and nearly did at the end of the day. My office is warm and that doesn't help, but it's just been SO bad for about the last week. I take a muscle relaxer 3 times a day to calm my shoulders down so I can turn my head (I also had arthritis in the neck, hand, feet, lower back....) tramadol and dilaudid 3 times a day so staying awake does sometimes present a challenge. But, I had been used to the dosages for a long time and the meds didn't effect me like they seem to be doing now. I don't sleep very well at night and that hasn't really seemed to have gotten worse. It just is. Anyone out there have any words of wisdom, suggestions, uplifting comments....Anything that might help me right now. Constant pain AND not being able to stay awake is doing a number on my mental state. I feel like I want to cry more times than not, but I don't want to live my life feeling sorry for myself.
Thanks for listening...
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melpom responded:
Welcome indiancyclegirl.
I don't have the answer to the fatigue issue. I have been fighting it for years. One thing I know helped was increasing my vitamin D. I had it checked and was very low. I now am within range but still take a supplement daily. Have you had this checked? I couldn't take any meds for the FM due to the fact that it increased my fatigue so much. I hope others will reply and give you some answers. Wishing you well! Mel
 
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Anon_10089 responded:
You may want to explore ways to sleep better at night--for us with FM that is a gross understatement!!

I struggle with the same thing. I find a dosage of about 10 mgs of melatonin can help and even just benedryl and always a cocktail of those two along with magnesium--and right now I'm taking clonazepam for sleep too. There are also some good herbal mixes out there with things like valerian root, hops, etc.

My new doctor also just gave me a stimulant med for the day. I think doctors don't always like to do this but she thinks instead of trying to put my brain to sleep during the night, we should try to wake it up during the day. I just started taking it, though, so nothing to report yet.

Improving night time sleep will bring about slow and subtle changes.

Also, have you tried having a small snack of something high in protein or good fat? That could help if it's a blood sugar issue. Almost nothing gives me more energy than good fat--avocado, coconut oil, etc.

I hope you can find some help and support here!
 
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missist replied to Anon_10089's response:
Hi- I no longer work outside the home--so I don't know if that matters--but I have been more active lately due to babysitting about 30 hours a week for a 2 & 3 y/o.

Since my pace has picked up some--I always pace---that is the best hep for pain-- my pain level is up--but my fatigue level is better than usual.

It may be you could be helped but some physical activity-- is what I am thinking-- maybe a walk during lunch? and again after /before work some activity. It can just be 10 minutes really.

One thing that always messed me up with doctors saying to exercise is I would try to do a full exercise program or work out like healthy people do-- bad bad bad idea.

Instead I find if I do some yoga stretches on my sun room floor by myself (not running to class) just using a youtube video for my teacher (free and I can pinpoint areas I want to work on) Those light stretches and some time lying flat and meditating--can really give me a boost to do the next thing. Like this week I am challenging myself to do things a litte in the the evening--which I never do. I have scheduled a chiro apt and a massage at 5 pm on different nights and I was just at a weightwatcher meeting this evening too---

Its helping to stretch my active day a bit.

I also agree with the comments on blood sugar--I think protein is great. also--i'm not sure where I stand with saturated fat--I'm thinking I disagree with it being 'bad' in small amounts--I tihnk it is something I need to keep an eye on--and measure out--but I don't like the idea of skipping it.

Mary
 
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missist replied to missist's response:
One other thing--I'm noticing you are getting what should be pretty good pain killers--just curious do they not help you?

I'm still looking for an effective pain relief for myself I seem to have gone through all the nsaids now and I don't think I can use those anymore. Gabapentin does help me--but not enough.

so I dont know what to do about it really-- Ive tried vitamins, supplements, herbs, etc..
Mary
 
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katmandulou responded:
Hi indiancyclegirl, and welcome!

I'll bet we've all been through that: dealing with the pain while we're exhausted. Those are two of the classic symptoms of FM.

Are you sleeping at night? Some of us do, others don't. I've been in the latter category lately. Some nights I'm still awake at 3am! I've been taking Melatonin (3mg, with my doc's blessing) at bedtime, and it makes me tired enough to relax, which is also key.See if your doc thinks it will help you.

Remember that what works for one of us might not work for all of us.

I wish you the best day you can possibly have!
Lou
 
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indiancyclegirl replied to missist's response:
I tried all the NSAIDS and had side effects from all of them. Now I'm on a muscle relaxer, Tramadol and dilaudid. The combo works most of the time to take the edge off but there are days when even the full gamut doesn't help.
 
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booch007 responded:
First thing is ...do you ride an Indian cycle? Hmmm good stuff.

Ok back to this, Is it possible to do TrP injections? I know that my persistance with this therapy has paid off for me.

TrP massage did little other than active all of them. I believe very strongly also that the fatigue for us has a root at the muscle level. TrP's are energy users, they are maintaining a taut band of muscle needing alot energy to be maintained.

The muscle fatigues easy. ROM and movement is tough.
The ealy injections were worse than now as they are conditioned to let go. Your meds are against you too, but I remember being there in the seized body and in pain, unable to stretch out. I had to move from Motrin to tramadol but I had the injections every 2 weeks to get me better.

It is 10 years of injections every 2 weeks and that is how I have broke free I feel. Persistance with this. I learned the tools of "arms stay home" which i still practice, hydration for the muscles and always watching where I am at in the day for energy. "The spoons ." I see a neurologist who, first diagnosed me and then began this crazy treatment.

We had a resident MD in my session yesterday andI just said " OH you have come to watch the voodoo..." We have no idea why this works but it does!. (I mean there is theory of the metal needle breaking the energy flow). I hope I get a good twitch and release for you to see....the session was good. I just spent a bit of time talking about "believing" the patients who come in this state. Learning of this disease is so important as there are many fighting it everyday 24/7 and that is exhausting.

So...in the book "FM and Chronic Myofascial Pain", by Dr Devin Starlanyl you will find helpful tools for you. Heat and massage (wide sweeping) massage is helpful to give you some benefit. I got the book on amazon and the second one is only about TrP injections and this componenet of FM.
The saying goes that all FM patients have TrP's but not all TrP patients have FM. Hard to separate at times as the symptoms and complaints are so close. I marvel over my sights being symmetrical from left to right.....amazing this body of mine.

Good luck, with this time put in, I have about an 8-10 hour wellness window with my meds too. Soma, Tramadol and Savella 12.5mg. I take Mg and Vit D(which I needed thanks to Mimi) and B Complex, CoQ10. All to help the muscles.
They say TrP syndrome is a overuse, misuse situation. Being the charge nurse of a busy ICU for my carreer set me up for this. I worked nights and sleep was never right. But the job demanded alot and I gave it, until I broke in 2000. So it is 14 years of figuring me out and reinventing everything I do. Better is better. I have learned so much.

Good luck to you and I know you will get there. Hugs, Nancy B
 
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booch007 responded:
OH... the first thing I learned here on the board way back when was to put a memory foam topper on the bed. I tossed all night (to get off the TrP's.)......it was priceless to get me a better deeper sleep.

I love this fmily, they gave me so much as I was on the journey to better. Each fall and crawling under a rock was helped by a hand pulling me up and out from that low place. Years ago there was a lot of humor on here despite the pain, I wish I was a clown...but I am awful with those one liners that crack people up. (no wit) .

Good luck again. NancyB


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