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MIZCAW's Photo MIZCAW SparkPoints: (32,239)
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3/22/12 11:31 A

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Thank you. I actually have talked to my Dr several times for a more natural method to help my muscles relax and me sleep. They tell me to go ahead with what I've been doing. I have a list of different vitamins that have been suggested that I'll be taking with me on my next visit. I want to know which ones she would suggest and how much of each before I start them. Once that's done I can move forward on helping myself even more. I know that weight loss is also a key. I lost several yrs ago and felt a lot better, now the weight is back and I'm having the major probs and pains again.

Chris

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NYTRINK's Photo NYTRINK SparkPoints: (18,395)
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3/22/12 9:23 A

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Hi, Mizcaw,

Reading through your posts you noted that you need Typlenol PM for sleeping. You may want to check w/your doc about subbing in melatonin supplements instead. you already make melatonin in your body, but sometimes we don't make enough. I had lots of trouble with sleep previously, and my doc suggested 3-5mg of melatonin about a half hour/hour before bed. i do it every night, and it does help me (I take one 3mg chewable). It's cheap and effective. When I sleep well, the pain definitely decreases. They say melatonin has to build up a bit before you notice a difference - it took me maybe a week or so to feel the benefits, but now if I forget one night, I'll be wide awake at 11pm wondering why :) Good luck - I know not everything works for everyone, but between teh melatonin and amitriptyline, my fibros under control most days.

~Katie

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MIZCAW's Photo MIZCAW SparkPoints: (32,239)
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3/18/12 12:00 P

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Thank you for the warning. Although I already knew about the danger, others may not have. My primary Dr. actually has prescribed 5000 for me. Because of something in my body if I go out in the sun for more then 5 mins at a time I burn deeply. I don't get enough sun to keep my Vit D levels up. They are monitoring the amount I have to make sure I don't get to much.

Chris

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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,839
3/18/12 1:49 A

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Do please be careful with the vitamin D... for most people, ten minutes a day in direct morning sun is all that's needed to produce enough. Supplementation, particularly in winter or in climates where sunlight is rare MAY be helpful, but only if it's something you as an individual actually NEED. Taking too much can be kind of dire, quite toxic, if you accumulate more than your body can use. If you are taking vitamin D in ANY form, your doctor should be aware of that, of how much you're taking, and should be monitoring your intake with regular blood tests to avoid the toxicity.

I felt the need to do some research on this particular vitamin: I suffer from a "PROFOUND deficiency", because I have CKD (chronic kidney disease). My specialist explained a lot to me that I didn't know before, and I did some additional reading: our kidneys process the vitamin D from one form to another, and when they don't work right, it doesn't always matter how much we ingest. We can feel better because of the placebo effect, especially in the beginning, but could actually be just pouring our money away. Another reason for those tests... if you're taking huge amounts and it stops "paying off"..

...Well...

...There is a prescription for the end product: it's actually considered a hormone, and is not available over the counter...

Just be careful, and don't take more than your doctor advises, okay?

...silly, I know, you're all pretty smart or you wouldn't be here, but I just have this bad habit of worrying...

emoticon

"The real secret of success is enthusiasm..." thanks, Walter P. Chrysler. I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!

Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL

Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called


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3/16/12 11:11 A

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I, myself, have never had bad head pains, alto I have had migraines in the past. They didn't link those to fibromyalgia however. My most recent trip they did the pressure test, fibro seems to cause pain when pushed in certain areas where nerves come together, even if you yourself aren't feeling pain at the time. Sciatica caused my major flair up so they gave me meds to take care of that, including flexeril which helps relax muscles so one can sleep. Sleep does help keep it under control. They also suggested easy stretches which don't pull or hurt muscles, these can also be found in pilates and yoga. The suggestion was also for specific vitamins that have been known to help, those are Vit D3, in 5000 to 10000 units daily, magnesium and fish oil daily. These will also help keep cholesterol down. I've been taking the Vit D3 and it does seem to help.

Chris

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ROBINCT135's Photo ROBINCT135 Posts: 126
3/15/12 5:19 P

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I am so aggravated, so please forgive me for venting here...just looking for some advice and possibly answers. I have had unexplained chronic pain (all over, but especially bad head pain that feels like a numbing, burning pain in my muscles) for many years. In the past, about ten years ago, I went through going from doctor to doctor to try to find out what was causing the pain...my family dr. sent me to a neurologist (had CT scans and MRI), then an orthopedic doctor. Prior to that, I'd gone to a rhematologist about 22 years ago, when the pain started...I don't have Lupus or arthritis, and none of the pain meds. way back when helped.
Ten years ago, my family dr. prescribed an anti-depressant...he said it had helped a few of his patients with chronic pain. The med. is Effexor XR, and it completely took away my head pain...a lifesaver for me! I've gone off the Effexor XR twice in the past, and each time, about six months after quitting it, the pain has come back. So, about a month ago, I went back to my family doctor (a different dr., since the other one retired), and she put me back on the med., but this time it's a generic equivalent. (I don't have any insurance). I've been taking it for a little over a month, but it apparently hasn't kicked in yet, because the pain is still bad. Now, she wants me to go to a neurologist.
22 years ago the rheumatologist said that I might have fibromyalgia...but, I'm sure things have changed since then, since it was so long ago. My current family doctor says that it could be fibro., but she's not referring me to a rheumatologist.
Obviously, whatever is causing my pain is not life threatening, since I've had it for 22 years.
My gut feeling is telling me that the pain is not neurological (since I already went to 1 neurologist almost ten years ago, and they could find nothing).
Do you think I should just find a good rheumatologist and go on my own?
For any of you here who have fibro., do you have bad head pain that never goes away?
Thanks for listening & for any suggestions.


Robin


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3/14/12 1:17 P

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The test for fibro is actually basic. I've had rheumatalogists, neurologists and various other drs do the same thing. There's even an online sight about fibromyalgia that shows the pressure points they use. This dr only used the ones above/at the hips to push on. In most fibro patients all these pressure points are very tender and painful when pushed on, even if they have no other pain.

Chris

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JAWS3410's Photo JAWS3410 SparkPoints: (263)
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3/13/12 8:05 P

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MiZCAW..what was the test that you had done for fibro? I have been told by many doctors that there is no test for it?

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3/13/12 5:43 P

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He suggested several vitamins I can take once this is under control. He even gave me a website where I can get them for less then I can in the stores here. He gave me the exercise that is best to keep the muscles moving, I like pilates myself when I can do them. I do a lot of walking, at home I try 1/2 mile each day. Mondays I work in a food bank, I walk back and forth between buildings to get the list of those needing boxes and to the building that the boxes are packed for them.

On normal nights I take tylenol PM to help me relax and sleep. Without it I don't sleep. I can't use those with the vicodin but will start taking again after this is over. I prefer making my own on the foods when possible, the sugar is a bit harder, but I've been cutting back on the sugar intake. I have to watch that since I'm also hypoglaucemic.

My thoughts are if I'm not in pain I don't need pain meds. I do however need to stretch and walk. I know my weight is part of the problem. It puts to much stress on my joints. Still working on that part, and I know I'm loosing it slowly, even if the scales don't say so. The jeans I've been wearing are getting looser lately. Had to pull them back up to waist last time worn because they kept sliding down.

Chris

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DIANAPHOENIX's Photo DIANAPHOENIX Posts: 354
3/13/12 2:46 P

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Hi - I can really relate to your experiences with flares and doctors, and know how discouraging both can be. What works for me may not work for you, but here are a few things that work for me:

-Be vigilant about sleep, and a comfortable bed. When traveling, I have been known to take along a twin-sized foam egg-crate mattress pad.
-Take the pain meds when you need them - the stress of missing out on activities can make a flare worse.
-Avoid sugar and over-processed foods. I don't say never, but there are pain spikes when I do too much of these.
- Gabapentin helps with sleep and pain.
- Walking, even if it's only to the street and back, is helpful.

I hope you find some help with the forums. I have found some very caring and helpful people here.
- Diana

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MIZCAW's Photo MIZCAW SparkPoints: (32,239)
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3/13/12 2:15 P

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I'm not used to using forums, but I'll try. I was diagnosed with fibro many years ago. I have learned to work through it and use easy stretches to help with the problems it causes. Recently I had a major flare up. It started with Sciatica and triggered a flair up in my left hip, to the point it was hard to sit, stand or walk. I went to urgent care locally, the dr there gave me meds to help with the pain and muscle relaxers. He also redid the test for fibro and rediagnosed, then showed me the same stretches I've been doing for years, along with a new one. I'm not working to get myself back to where I was, walking the daily 1/2 mile, building up to hopefully a mile, and working on my quilts again.

Chris

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