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New here, it's the fatigue that's killing me
7 Replies
mareyeka - May 3

Hi all, I've long suspected I have fibro and I received an official diagnosis last week. I found an amazing rheumatologist who LISTENED to me. Imagine that!

Anyway,my pain is manageable, it's not so bad that I can't cope, but the fatigue is going to kill me. I am very, very lucky that I work from home so I sleep whenever I need to. But some days, like today, that's all I want to do. Getting up and about to do things is a real strain on the energy reserves I do have.

My dr gave me a muscle relaxant to take at night to see if that may help me relax, reduce the pain and get some much needed sleep. I have no problem falling asleep, just staying asleep - as I've read most people with fibro do.

I do get out and walk quite a bit most of the time, even my most fatigued days, so I am getting exercise.

I'm not a newbie to the health field. I'm a nurse, although I no longer work as one. Because I'm a writer, I still keep very up to date on health stuff. But if anyone has any suggestions to help with the fatigue, I would be so grateful. I told the dr, I could handle the pain if I could just get rid of the fatigue.

Thanks for "listening."

 

Fantod - May 3

mareyeka - Welcome to the board! Sleep issues are very common among people with Fibromyalgia (FMS). This syndrome interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain. A muscle relaxant may not be enough. You may need to add a sleep aid like Amitriptyline too.

Huge energy swings are a common complaint among people with FMS. Eat smaller, high protein meals throughout the day to keep your blood sugar level. Avoid propping yourself up with caffiene and chocolate. The downside is even more extreme when you do that. You could try D-Ribose which is helpful for maintaining energy. I use Corvalen which was originally formulated as a medical food for heart patients. For some reason, even though Corvalen is also D-Ribose, its formulation seems to work better for me. You can find sources to purchase these items online or even your local health food store.

And finally, if all your rheumy gave you was a muscle relaxant than you need to find someone else. There are now three primary medications used to manage FMS. Lyrica, Cymbalta and Savella. There are also some pretty effective homeopathic remedies to manage pain and sleep issues as well. I use a mix of homeopathic and conventional medicine to manage my symptoms. If you were not offered any of these options than this is doctor who may listen but is not doing their job. The longer a chronic pain cycle continues, the harder it becomes to manage or stop.

My final advice to you is to go onto Amazon and purchase "Fibromyalgia for Dummies." Like all of the dummies series it contains good, basic user friendly information. And, I'm really glad that you recognise the importance of getting some exercise which is so important. I wish that I had your gumption. Take care.

 

mareyeka - May 3

Thanks for the welcome Fantod.

My dr isn't against the meds and will prescribe them if I want them; but I'd rather try other avenues first. I've seen what the side effects of some of these drugs can do and I tend to have very unusual reactions to medications. If there's a side effect that only one in million will get, chances are that I'll be that one. ;-)

I do take an antidepressant (Celexa) and I've been taking it for several years now. I know that some people do take both Elavil (amitriptyline) and Celexa together, but my depression is very stable now with the Celexa so I don't want to mess with dosages and adding a new but similar type of drug, if that makes sense.

I'm going to go order that book right now. Sounds like exactly what I need. Thanks!

 

January - May 4

HI mareyeka - I respect Fantod a lot, and I know these drugs work for some people, but I'm pretty down on the 3 FDA-approved fibro drugs (read the background about how they got pushed through, and the research on how effective they really are - they do NOT work for the majority of fibro patients and come with some nasty side effects!) I have researched supplements and other things. You say you are mainly bothered by the fatigue; I have problems with it too. One thing I've found very interesting is the connection of fibro with viral infections. The times I have taken antivirals it really helped with fatigue and brain fog.

I also think there is a big connection with antidepressant use and fatigue. As you may know, they can be tricky and sometimes stop working effectively, causing odd symptoms that are really withdrawal. These drugs are very addictive and typically, as time goes by, you need to increase your dose. OR, the drs. prescribe doses that are higher than what your body needs, and that can down you out. It's VERY possible that your fatigue is related to antidepressant use. There are many forums now, with a lot of information from patients who have long experience with antidepressants. Might want to do some checking online.

Every one is different, but here's what has helped me with energy levels: DHEA, ubiquinol, gingko, ginseng; acetyl L-carnitine; alpha lipoic acid. I'm currently trying out D-ribose, and I think the Jarrow Formula works the best. I'm one of those who does well on caffeine (and it helps with pain relief) so I use Vivarin tablets, cut in quarters or halves - that gives me 50-100 mg per dose. Helps a lot when I need energy to do things.

For sleep, I use melatonin. I take time release early, and sub-lingual at bedtime. I take a very small dose of Ambien. But I recently read some research that said melatonin was more effective than prescription drugs. I have in the past used Elavil for sleep - but did much better taking a small dose of Valium. It helped me stay asleep.

You might be interested in the Life Extension website. You can join their organization and get a monthly magazine which has really good cutting edge research on supplements. You can call and discuss things with a doctor. I would be careful with the "health consultants" though - some of them are knowledgeable, but some just try to sell you stuff.

Welcome to the club - I think you will find some good information on this site, and some good people.

 

mareyeka - May 4

Thanks January. Good info there too. Taking every bit of information I can find so I can try different things and figure out what is right for me.

I've ordered the book recommended and I am waiting for a call back from an acupuncturist/masseuse who works with people with chronic pain issues. I'll sound her out and see if I'll give her a try.

 

Fantod - May 4

mareyeka - I totally understand what you are saying about medication. I am also extremely sensitive and will have that one in a million reaction. Did you know that this is yet another perk of FMS?

However, without something to manage your pain levels your immune system stays on overdrive to try and combat the additional stress that your body is experiencing. I am on the lowest doses of prescribed medication (Cymbalta and Gabapentin)to at least take the edge off.

I supplement with Curamin made by Terry Naturally for pain, malic acid for muscle twitching and cramping, Calms Forte and Mid Nite to assist with sleep issues. Whether you chose prescription or homeopathic is pretty much immaterial to me. But, I do feel that you should chose something or you may be setting yourself up for more problems down the road. Our poor bodies are really battered by this syndrome. The additional stress that it places on the body may cause a cascade effect of other problems.

I've used acupuncture which works well as long as you continue to go for treatment. Initially you may find that your pain levels are much worse and then it begins to taper off. It is very important to use someone who is versed in several different kinds of acupunture for the best results.

I'm glad that you ordered the book which will help you understand what you are dealing with on a daily basis. It is also a useful tool to share among family and friends who could use a better understanding of this syndrome. Fibromyalgia Awareness day is May 12th. Take care.

 

annkj1975 - May 9

I have just started taking ginseng/royal jelly vials (2) times a day, tastes very nice and takes away the fatigue...noticeable difference even on the first day...wish I could find something to take the pain away. I live on Tramadol and that just makes it bearable, but leaves me feeling very tired....the Ginseng/royal jelly helps:))

 

Sonja44 - May 24

B vitamins have been helpful for me. At Costco there is an all natural B vit sup in a powder form to mix in water (more quickly absorbed)...its called "Zip Fizz."

I take it in the morning and early afternoon. Don't take them too late in the day or you'll have trouble sleeping (more than usual).

Since I'm so sensitive to every med made...I take Melatonin Plus for better/deeper sleep. Works good for me.

Good Luck!

 

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