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shortie93 posted:
Hi all!
I'm new to the community, but not so new to fibromyalgia. I was diagnosed at 14, and have dealt with the pain and stigma the best I could under the circumstances. In February of this year, I had the worst flair I've ever had in my life. I thought I sprained my back, and my regular doctor ordered tests and all sorts of fun stuff. When I went back a week later (still in massive pain) my regular doc was on vacation and I had to see someone else in the practice. He examined me, looked at my medical history and asked if I'd humor him and try something. He put me on Prednisone for 2 weeks and I'll be darned if that wasn't the best 2 weeks of my life. I felt human again! I found out that he specialized in fibro and started working with me to manage my pain and get me on a good track.

Unfortunately, in April I lost my job as a bank teller for the past 7 years (not the greatest job for fibro, I know). Losing the job meant losing health insurance. I haven't been able to afford going back and I haven't been able to get any refills for the pain meds or anything else due to the cost. Surprisingly, my arm/wrist/shoulder pain has gotten worse since I lost my job.

Besides the usual exercise and diet, what are the best over-the-counter reliefs? I'm allergic to advil and ibprofin and I have IBS as well. I tried Magnesium and probiotics and both left me with horrible diarrhea. Melatonin usually works, but with the weather changing, I'm tossing and turning all night and can't get comfy even with extra pillows under my neck and between my knees.

Any suggestions would be greatly appreciated!

Jessica
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dollbug responded:
Hello Jessica and welcome. MiMi in NC. So sorry that you are dealing with so much at one time. I am sure though that you will soon find some good tools which will help you cope better. It is interesting just how a doctor who knows about FM can make a difference in how a person is treated for the wrath of the dragon, aka FM.

Have you tried using a heating pad? Drinking lots of water every day also might help. I do not know how much magnesium you were taking but this is one thing that has certainly helped me. I take magnesium malate. I read that if you have diarrhea then you are taking too much. Can you cut back on what you were taking just to see?

There are a lot of people who are also low, sometimes very low in Vitamin D. Low Vitamin D can cause some people to have additional pain.

Have you tried wearing wrist braces at night? You can get these at walmart or other places. I know that for a long time I had major problems with carpal tunnel. I have had 7 hand surgeries in all. (2 of which I fell outside and broke each of my wrists, thank goodness it was not both at one time.)

Taking a hot shower at night using lavender bath salts helps me to relax so that I can sleep better. You probably already know that we, FMers, have to get enough sleep.

I hope you will check out the info here under *tips* and *resources* and be sure and read the *member toolbox* as you will find others good tools there that you might want to try.

We have a really good support group here and I hope you will post often, ask questions and make comments and/or suggestions. We do understand what you are dealing with.

Take care and good luck.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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sparkyar responded:
So sorry that you are going through all this... I use BlocPain I get it at the health food store it is a topical menthol spray mixed with natural stuff... BEST STUFF EVER!!!! When I can not take a pain pill I use this on my muscles.. If it is bone related it will not help, but for FM it does I hope this helps..
 
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Anon_10089 responded:
A quick note on the probiotics--if you didn't start very slowly with them, you may want to try it again to help your IBS. Or instead of taking the pill form, take in probiotics through fermented foods or drinks like Kombucha tea. But even with foods, you need to gradually increase your intake. I know a lot of people have been able to help their IBS by balancing their gut bacteria but it is a long process, even taking a year or so.

I have found my digestion does really well on a diet very low in grains, but I know everyone's different.

I hope you find some ways to help your pain!
 
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shortie93 replied to dollbug's response:
Hi Mimi! Yes, I use a heating pad, especially on my back and neck (I get terrible migraines). It helps a lot with my TMJ also. As for the wrist braces, I have a couple different types, along with ankle braces, and sleeping with them makes my hands/feet go numb. That's a major problem I have when sleeping. Even when I don't use them, I wake up feeling like my hand is a balloon.

I LOVE my baths at night. Since we have cold weather in Jersey, I have a hard time with my feet and knees aching when they get cold. I keep my snuggie handy and sometimes get so desperate I wear 2 pairs of fleece socks.

As for the vitamin D...yes, I was tested about a year ago and found I had and extreme deficiency. I take Depo Provera to help with my menstrual pain (the only thing the works) and I have to take calcium as well due to the long term side effects of the medicine. So the doc suggested using a calcium w/ vit d and also a separate supplement.

I think I always just felt like complaining wasn't going to get me anywhere, and most people look at me like I'm nuts when I say something hurts. I'm just now realizing that there are people out there that DO understand (like my doctor) and I'm trying to make some positive changes to help ease the stress and pain in my life.

I really appreciate all the help and support! Thank you!

Jessica
 
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shortie93 replied to sparkyar's response:
Sparkyar-
I'm going to have to look into this! I've tried using icyhot and all the cremes and all, but all it does is make me smell lol. I definitely appreciate the advice! Thank you!
 
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shortie93 replied to Anon_10089's response:
Hi Anon_10089-
When I first started taking the magnesium and probiotics, I took them together with the rest of my vitamins. Whoa nelly, that was a bad idea. It was so bad I had to go home from work. So I tried doing them separately to see which had the effect. The magnesium is 250 mg, which was the lowest I saw at the store. It didn't do much except make my stomach ache for about a week. I even tried taking it with food and at night to see if that would help, and no dice. The probiotics acted like a colon flush. It seemed like everything that was in my body decided to jump ship. I tried taking it every other day, but it just made me miserable. I have a hard time with my diet, because I'm also lactose intolerant, and sometimes food I was totally ok with one day makes me sick another day. I try cooking fresh, eating lots of veggies and fruits, and making sure there is a bathroom nearby. I know there are many different types of probiotics, but a lot of them are really expensive. Are there any cheaper powders you know of?
 
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Anon_10089 replied to shortie93's response:
Hi- You know, vitamins have almost always made me sick and I never felt much different on them, so I actually only take D. I do take magnesium too, for migraine prevention. B vitamins make me sick and have never done much for me anyway. But then I saw a chart of which vitamins are in what foods and I think I probably get a decent supply of B Vitamins anyway!

I guess my point is to listen to your body. The absolute cheapest way you could get some good bacteria into your diet is to ferment your own vegetables or make your own Kombucha tea. You can google both for the details. It might sound overwhelming at first, but it's pretty easy. You'd still need to start slow. Like with the tea, you can start with a sip a day and go from there. Getting your tummy healthy is a long-term process.

I actually used to be lactose intolerant too but am not anymore. I still don't eat a lot of dairy but it's nice not to have to worry about it.

It sounds like you're on the right track. I've had FM since I was a kid too, although I was not diagnosed then. I'm now 31. With pain that young, you grow up with "tools" to deal with it. The problem is explaining to young and vibrant peers why you need a nap! This place is great for information and support!
 
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dollbug replied to Anon_10089's response:
Hello....MiMi in NC. I did want to add something to your post. As with all medicines, vitamins and supplement can vary. I think sometimes it is the *fillers* which are used in some.

I have found that *source naturals* is a good brand. I have also taken *Pure* P5P....which is a processed form of Vitamin B 6. This has helped my back pain greatly since April. I have to take 1 capsule about every 24 hours to keep my pain at bay. If I happen to forget I am soon reminded by the pain returning.

Take care.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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kasie75 replied to dollbug's response:
Dollbug,--need to pick your brain!

I notice you have done your research on supplements. I am wanting to learn more so I can start getting supplements. I am taking a multi vit and started the mag called CALM. How do you know what else to get? I know taking to much of certain vit. can be bad. So how do I know what to take and how much to take?

Kasie
 
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dollbug replied to kasie75's response:
Hello Kasie...MiMi in NC. Yes, I have done all sorts of research on vitamins and supplements and what may or may not help FM pain. With my own trial and error process I have figured out just how to *control my FM pain*...but I have NOT found anything yet which has helped my chronic fatigue. I will tell you what I take.
Fibro Response and Magnesium Malate (both of these are source natural brands and you have to get them at vitamin store, (I only take 1 of each daily-now and sometimes I alternate them to every other day) Omegas, I take Salmon capsules - Dr. Oz says though that krill oil is better...so I plan to try the krill oil next...(I did take krill oil for a while one time-don't exactly remember why I changed) Omegas are suppose to help with inflammation and I think that we, FMers, do have some inflammation even though research says no. I take a multi vitamin (was taking one with extra D but then they stopped supplying this...I have no idea why. I am now trying to find one that I think helps. Dr. Oz says that we need to take one with 100% of the recommended amt. I have NOT found any though that do. I also take B 12 and Vitamin D (separate) I also take P5P which helps my lower back pain. (this is a processed form of B 6 which I now know my body can not/does not process the normal B 6) I also take Folic with DHA (I think this helps me with my sleep)...I also have knee problems. (have had 4 surgeries on my right one and my left knee is not good either) I take 2 Osteo Bi Flex (pink label).

So this is what has helped me cope better. I have learned though that I have to *tweak them at times*...as I think my body gets use to what I am taking and it will no longer work. I judge this by the way I feel.

As I am sure you already know, we are all different and what helps one may or may NOT help another. You have to figure out the *just right combination* which does the most good for you.

I will also say this that it takes at least 6-8 weeks of taking whatever you decide to try to get the full potential of what it does or does not do for you...and any time you change anything about it - you need to start over counting the time. I take the least amount that I can take to begin with. I have found that taking what is suggested (which sometimes can be 3 pills a day-does NOT work well for me). Again I start out with taking only 1 pill. It is probably a good idea also if you start only 1 kind at a time - just to make sure that what you are taking is *agreeing with your system*.

You should speak to your doctor about what you want to do, especially with Vitamin D. Have you had your level checked yet? This is really important. When my level was checked it was 12 or 14...which is way too low. Vitamin D should be above 50 - 90...which is an average range. This too can vary, just depends upon what you are reading. When my level finally reached 42 the doctor told me that mine was still on the very low end of what is considered *normal*. I took the prescription dose of 50,000 iu for a very short time and then the doctor told me to take OTC Vitamin D and to make sure I took these the rest of my life.

Vitamin D is really important for a lot of health issues. Do your own research as there is all sorts of good info about it online. Low Vitamin D can cause additional pain for some people (it sure did for me) and it can also affect other illnesses as well. There are some links right here under *tips* and *resources* that you can also review.

I just recently read that Vitamin D supplement is as good as a *flu shot*.

I did want to add that I do not know anything about *calm* which you say you are taking. I hope it works for you...as magnesium is also really important for us.

Drinking plenty of water is also important for me. Water is about the ONLY thing I drink...I do have hot chocolate most morning when it is cold.

I hope this info helps you.


Take care.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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kasie75 replied to dollbug's response:
Dollbug, thanks so much for the info.
I still need to get in to my doctor to get my vit. D checked because until now I was unaware it did not show up on normal lab work. I am debating on switching doctors also. My old doctor is the one who told me my Vit D was low and gave me some vit D pill but then she never rechecked it. I just thought my levels were low sunlight. I will follow up on this and check into the supplements and let you know how it goes.
Thanks
Kasie
 
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bette_kaffitz responded:
Jessica, Sparkyar, and Anon,

As always, I am so sorry that you have to deal with this frustrating condition. It is no fun.

However, as you must have noticed, you came to the right place. We have so much talent, experience, and compassion here that it just overflows into a giant envelope of care.

With the years of fibro experience MiMi can share, the raw caring of Mary, the wisdom of Linda and Nancy, and all the rest of our two cents' worth, it can be overwhelming. Take your time, try what sounds doable to you. Check out the "tips" to the right. And let us all know what helps you.

This sharing of the things that work and the things that did not, the good days and the bad, the family stories and the heartbreaks--all of this makes our community seem like a true family to me.

Welcome to the family!

Bette

P.S. I use KyoDopilis probiotic and have taken to really increasing my fiber content--starting with raisin bran for breakfast every day. No more cramps; no more surprises of loose or hard bowels. It was really bad and made me have my first colonoscopy at 38 because of heavy bleeding.


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