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kuziee posted:
I have been doing hair for a long time and haven't had any real problems besides the normal aches and pains. Until about 6 months ago, now almost everyday after working a few hours, my entire body is on fire. By the end of my shift I can hardly walk.

I work anywhere from 4 to 9 hours a day 6 days a week. I know I should cut back my hours, but I can't pay my bills if I don't work.

I am desperate for some tips or advice on how to make my days more manageable. I am still trying to figure this whole fibro thing out, since I only received the dx a few weeks ago. I am trying to read all I can about this and it is very discouraging .

Also my Dr is trying to get me not to take pain meds for my flares, he would like me to try other methods to decrease my pain. I have tried heat, massage, tens unit, yoga, walking, swimming, deep breathing basically anything to keep me moving. The pain is so intense at night and in the morning. I have another Dr appt on friday and I am going to need a refill. What is the best way to ask for more with out sounding like a junkie.
Taking back my life one day at a time!
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dollbug responded:
Hello kuziee and welcome. MiMi in NC. Dealing with the wrath of the dragon is not an easy thing for any of us. I do not know just how much you have learned about it but there are no quick fixes or magic pills that will work for us all. You should learn how to pace, pace and pace even more.


Have you had your Vitamin D level checked yet? If not, then you should speak to your doctor about this. Have you tried taking vitamins and supplements? I know that I tried different kinds of medicines in the beginning and did not find anything which helped me without causing more side effects. So I ended up doing my own research and have found what works for me. It does take time and effort to do this though.


You will probably find that pain pills will not work. Pain pills are for people who have short term illnesses. FM is not one of these and most doctors will not provide them to FMers.


I hope you will check out the info here under *tips* and *resources* and be sure and read the *member toolbox* as well. I am sure you will find something that perhaps you have not thought of.


Getting enough sleep is really important for most of us. Eating right and drinking plenty of water is also a good thing. Taking a hot shower at night using lavender bath salts might help your body to relax so that you can sleep better. Do some gentle stretches and/or exercises each day might also help...(GENTLE being the important word here).


Things will get better for you as you learn about FM and what you can do to help yourself. So hang in here and learn all you can about it.


Take care and good luck.






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

 
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firefly59 responded:
I have had dx of fms since 2002 and have tried everything. Was dependent on narcotic pain pills for 5 years and they didn't work, just made me sleepy with no energy. I weaned myself off and went thru horrble withdrawal symptoms for the last 2 weeks of detox. Never again will I take narcotics. They don't work on fms. Cymbalta has made a huge difference for me. I still deal with flare ups but at least I'm not doped up and addicted to narcotics. There has been a lot of research on medical cannabis to treat sleeplessness and nerve pain. In my state it is legal now so I have my card and use edibles at night to sleep and it works for me. I am allergic to Gabapentin or I would be taking that. Cymbalta hasn't caused weight gain for me and works for me. A hot tub is a blessing along with massage. I am going with more natural approaches because I have drug sensitivities. I also struggle with an injury while in the military that caused compression of the lateral cutaneous nerve in both thighs called meralgia paresthetica, it adds to the fms pain. But I rest up for any energy draining events. Also I was drinking diet soda and using sugar substitutes and stopped because I was having MS like symptoms but no MS. All symptoms went away so I guess some of us are sensitive to them. I eat healthier, I am a vegetarian but still eat dairy and fish. Had my vitamin D checked and was very low so had to take large dose supplement once a week for 10 weeks. We don't get a lot of sun in Seattle wa. Lots of luck to you.
 
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bette_kaffitz responded:
Kuziee,

I used to teach and had to be on my feet all day, too. When I was younger, I worked Christmas times behind a department store cosmetics counter. I know what you mean about the way your body can ache.

I finally found that I had to buy great shoes (I love my Easy Spirits.) that are fitted for both length and width. These 8 1/2 WW feet do not fit into a "medium."


Bring another pair of shoes (or new inserts) to work and switch during your break. It is amazing how much of a difference this little act can make. Your whole body alignment will be slightly different with the new shoes. This will allow your whole body to feel better--at least a little.

Try not to laugh, but I even brought a comfortable pair of heels to use for just a few minutes. Talk about realigning your body! 5 minutes in my heels would let me spend another 3-4 hours back in my working shoes.

You now have a baffling, painful illness. Pamper yourself whenever you can. Use any meds your doctor offers and you can tolerate. Do whatever it takes to get a good night's sleep. And try to make your clients laugh. It's amazing how much better that can make YOU feel.

And, of course:

Happier clients come back.
Happier clients look better when they leave the
salon. This brings in other customers who also want to look better.
Happier clients make your day easier.

AND


Happier clients tip more.


So have as pain-free as possible today. Tomorrow, have nothing but nice clients!


Bette
 
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Anon_10089 responded:
Hello-

Sorry for your flare up. You work too much to not have some kind of pain relief!

I think communication with our doctors is important. I was reading the state regulations for doctors prescribing opioids and part of that is that they try other therapies first. It's good that your doctor has a broad lifestyle view of FM, but there comes a time also where more might be necessary. If you are able to communicate to him that you have tried the other therapies, and continue to work on them, but that your employment is suffering, he should do something more for you at that point.

I use pain medication (norco) for my pain and find great relief. I have taken it for quite a few years and have not increased the dosage. However, I do not have the bad side effects and I also don't really have withdrawals when I don't take it. My body responds well to it and I have way fewer side effects on norco than on most of the other mainstream meds prescribed for FM. This could open up a whole other topic on what I believe are different types of FM, but that's for another day . . .

What are your doctor's thoughts on Tramadol? Some doctors are more comfortable prescribing that. Also, have you tried those older classes of anti-depressants, nortriptyline or amitriptyline? The doses prescribed for pain are tiny compared to the doses for depression and at that dose, are not considered as help for depression. I believe, too, that at those small doses, these meds probably are not difficult to come off of. If you have long periods of low pain, you may not need to be on meds all the time. Many other meds, like Cymbalta, can be very difficult to come off. And even Tramadol can be tough to get off of for some people.

The bottom line is that your doctor needs to understand that your life is not working as is. It's obvious you're not a drug seeker so if you have a decent doctor, he should see that. Perhaps in the future keep a pain diary so he can see how bad your pain is and how ineffective some of therapies are during bad flares. Of course exercise, heat, massage, etc. are good for us! But sometimes (often for many) it is NOT enough.

I find I have good appointments when I go in with a very matter of fact, organized manner. I usually go to the doctor with notes in hand. I try to not be emotional during the appointment, but I will describe how the pain affects me--in all ways.

You are working so much, that it seems like you do need an "emergency" type pain relief. Make it clear to the doctor that you will continue with the other lifestyle type therapies. Make it clear that you do not want to solely rely on a pill. The doctor seems to value you staying active. Make it clear that you also want to stay with your current schedule but need some help to do so. Acknowledge that there are other meds out there to try, but many take weeks to become effective and you need something now.

As always, the above are my opinions, and I am not a healthcare professional! I hope you get some relief--

--JR
 
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dollbug replied to firefly59's response:
Hello again firefly. Did your doctor tell you that you needed to take OTC Vitamin D? When I first found out that my D was so low, the doctor also put me on the 50,000 iu of prescription D and then told me that I would need to continue taking them the rest of my life. I have done lots of research on this and it seems like a lot of people have issues with getting their Vitamin D level back to within the *normal range and keeping it there*. I will also tell you that it took me over a year before I finally got my level back up to within the *low range*....(low 40's)....and I only did this by taking 4000 iu of OTC Vitamin D daily.


You should keep tabs on your Vitamin D level at least once a year, after you have gotten it back to where it needs to be. (the range is very wide and I do NOT think for a minute that everyone's level is the same)....some people need more than others. I have read that people who have chronic pain need to keep theirs within the high range.


I now take a multi vitamin with extra D. (source one from walmart) plus I take Fibro Response and Magnesium Malate (found in Vitamin stores) and Omegas, Vitamin 12 and P5P (which is a processed form of Vitamin B 6 found in Vitamin Store, this helps my lower back pain).


We are all different and you will have to do your own trial and error process to figure out just what you need. It is a process with almost anything we do.....which takes time and effort. Whatever you decide to try you should allow at least 6-8 weeks before you decide whether it is helping you. (unless, of course, it is making you sicker than you have been).


I am one of the FMers here who has learned how to *control my FM pain by taking vitamins and supplements and doing other things as well*....but I have NOT found anything to help with the chronic fatigue.


Take care.




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

 
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kuziee replied to dollbug's response:
HI MiMi,

Thank you you for the advice
Taking back my life one day at a time!
 
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kuziee replied to bette_kaffitz's response:
Hi Bette,

Thanks for the advice. I will try bringing a different type of shoe to switch into. I'm willing to try anything at this point.

Thanks for taking the time to reply, I appreciate it.
Taking back my life one day at a time!
 
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kuziee replied to Anon_10089's response:
Hi JR,

Thanks for taking the time to reply. I am going to the Dr today so I will talk to him about some of the meds you suggested and see what he has to say.

I just know something needs to give, I appreciate the advice.
Taking back my life one day at a time!
 
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hillbillieswife responded:
Hi Kuziee,


I have tried every type of shoe under the sun and even orthotics inserts for nerve damage in my feet. I can tell you that I finally bit the bullet and bought a pair of Dansko. They are a little pricey but after wearing them for just 2 weeks I felt so much better on my feet. This was 2 years ago now and I now have 5 pairs and wear nothing else at all on my feet. I have tried occasionally to wear my sneakers with the orthotics and find that I can only wear them for about 2 hours and I'm back in the Dansko. I figured they were pricey but all the money I was putting out on other shoes I was actually spending more and then giving them to goodwill stores. I have also found a bath mat from Conair which creates a whirlpool affect in the tub which helps my a lot.


I hope you find this helpful.


Take Care,
Michele
 
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kuziee replied to hillbillieswife's response:
Hi Michele,

Thank you for the advice, I will look on line for Dansko tonight.

Thanks again
Taking back my life one day at a time!


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