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hannaloren posted:
ies there any one there who can give me some advice on FM

i am new to all those aches and pains but im trying to get use to them
i used to do a lot of sports and also later on running and biking but now it feels like everything has changed but i'm trying to live with it i was asked by the dr. if i could try 5 weeks on prednisone but i declined i,m petrified of steroids
has anybody else had this treatment love to hear from you thanks hannaloren
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bette_kaffitz responded:
Hanna,

Fibromyalgia is still considered a syndrome (a collection of symptoms) instead of a disease. You have multiple aches and pains above and below the waist and on both the right and left side of your body. If this has been going on for 3 months or more, they call it fibromyalgia.

Actually, there are are many other things that are going on. You have a difference in the way your nerve fibers react to stimuli. Things that would not be experienced as pain by others are by you. Pain signals are being amplified in the spinal cord. Other signals that should be dampening your pain are not doing their job. There are many pain-related chemicals in your brain that are overabundant. Again, the chemicals that are supposed to lessen pain are in short supply.

At the same time you are getting less sleep and poorer sleep than you previously enjoyed. You are dead tired. You get up each morning as tired as when you went to bed.

Many of us get other symptoms too. We get migranes, an irritable bowel, numbness and tingling, and, of course, fibrofog. Fibrofog is what we call that spacey feeling of not being able to concentrate, forgetting all kinds of important things, and just not being completely focused on the here and now. (I think this fog comes from no sleep and all that pain being all you CAN think about.)

There are many different types of treatment for fibro, but not a single one works for everyone. In addition, many of us have multiple chemical sensitivities and cannot use any of the drugs. The only way to find what works for YOU is to try it for 6 to 8 weeks. This is a slow and frustrating process.

You will need to work with a medical provider who understands that you are in constant pain and relentless fatigue. Many primary care doctors or nurse practicioners can do this. If this does not work for you, you may want to see a rheumatologist or neurologist. The important thing is that you and your provider can work together.

There WILL be times when you are in intolerable pain and need extra help from your provider. Your doc will have to believe you and be willing to give you a short term prescription that can help you over this bad time. Only a good, long-term relationship will allow your doctor to write this prescription.


Living with fibro is not easy. Your life will never be the same. However, if you can be patient and try different things whether they are meds or things like physical therapy, you will be able to make your life more liveable.


It is not easy, but it is something you can do. Try a few of the tips to your right here. Ask for help from those of us who have been there. Simplify your life. And get ready for an entirely new experience. Fibromyalgia is always changing. You will have to too.


Bette
 
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hannaloren replied to bette_kaffitz's response:
thank you so much would you probably know about the treatment with prednison sorry i got so may questions thank you hannaloren
 
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hannaloren replied to bette_kaffitz's response:
thank so much
regards hannaloren
 
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booch007 replied to hannaloren's response:
Hanna,

Prednisone pills are NOT a treatment for FM. We are not inflamatory. It is a pain sensory thing. I am Chronic Myofascial Pain and have trigger points. Which puts me in the TrP injection arm for help.

Giving you prednisone is probably going to make you feel better as steroids give you a "sense of well being" with all the chemistry changes it makes. So it is not a valid try orally to see if it helps you. Everyone can feel better on steroids......

You can get grandios ideas of self too on steroids......like "let me clean the whole house in one day and pull down the curtains and wash them...maybe paint that wall ....Ha LOL.
It can be bad....I have seen it! So I don't know if that is his plan to give you oral steroids. I agree it is not a great move for you and I am concerned as well.

Under another post I spoke of trigger point injections and the use of steroids in that. It wasn't clear that it was a pill or an injection. Steroids do alot to your body. you hold fluid...increases free sugars in the bloodstream and alters the calcium reabsorption it can take your sleep away as your mind wants to keep going and then you get and increased appetite.

IT IS A BAD GUY...but if a MUST is in there. The you MUST go with it. Do you have markers of inflamation with this doctor that he wants to do this? 5 weeks will also shut down your adrenals ( they stop producing there own steroid as it is in your system) and there is a weaning off process that has to be done. (to get them back up and running)

We use steroids in the pulmonary patients all the time. YOU NEED TO BREATHE. see there is risk and benefit for the patient. Maybe asking for more information?

I always suggest to patients here to get the book FM and Chronic Myofascial Pain, by Dr Devin Starlanyl. It is so good to understand things and then there are now 2 other books to look at. But that first " survival manual " is priceless to me!!
Amazon.com 19.99. Money well spent.

Good luck, Nancy B
 
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dollbug responded:
Hello hannaloren and welcome...MiMi in NC...so I have to ask you...did your doctor explain why he wanted you to *try the prednisone? And then I want to ask your IF this doctor treats FM. I think some doctors just *guess* what might help us and use us to *experiment*...(which is not a good thing).

I do hope you will check out the info here under *tips* and *resources* and be sure and read the *member toolbox* as well. I also want to tell you that Nana B is a nurse...and we have other people who are in the medical field as well.

I will also say this and this is my own personal opinion. I know that research indicates that inflammation is NOT a part of this ugly illness...bt I happen to think that it is. I know that I have had elbow problems and ended up with surgery on it. The surgeon told me that it was really read and inflamed and swollen. I never did anything, that I am aware of, to have issues with it. It appeared one day and I have months of problems with it as it continued to get worse. The surgeon told me that he thought it would take at least 2 years for it to heal. It took a few months over the 2 years. (this surgery was not a pleasant one at all).

Learning about the wrath of the dragon, aka FM...will surely help you to figure out how to *manage or control* it. It does take a process though to do this...as nothing is a given on this. What works for one person may or may NOT work for you. You have to figure out what will help you cope better.

I would like to encourage you to be sure and ask your doctor to check your Vitamin D level, if this has not been done yet. Low Vitamin D can cause some people to have additional pain and it can also affect other illnesses as well. It is just a simple blood test but you MUST ASK the doctor to run it, as it is not part of the *normal bloodwork* that the doctors do. (unless the doctor knows that this can affect our pain levels).

Hang in there and know that we understand exactly what you are facing here...things will get better though.

Take care and good luck.



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

 
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bette_kaffitz replied to hannaloren's response:
Hannaloren,

One of the treatments my super neurologist tried was a step-down treatment with prednisone. I think this was because of his feeling that there were some Lupus-like symptoms that I was dealing with.

I took 7 pills a day for 2 days, 6 for 2 days, 5 for 2 days, etc. until I was down to none on the 14th day. I did not notice any change in my FM, but there were no ill effects either. I think that IF I had had Lupus, I would have gotten a little better. Diagnosis by treatment?

Ask your doctor why you are being put on prednisone. Be sure to ask about any red flag side effects. You and your doctor should both agree on any treatment. Why are you taking this? What changes should you notice? How long will it take before you notice improvement? If you experience bad side effects, what should you do? What if there is a problem on the weekend?

Prednisone will probably be just the first of many medications you try. Some will help. Some will not. Some will be intollerable. But, if you never try any, you will never find what helps you. And then, there will be new symptoms. Or, just when you are under control, the meds suddenly stop helping.

This is a very frustrating illness. Try to remember that it is just as frustrating for your doctor. She want so much to help you. Chronic illness is something that needs constant attention. You will be seeing your doctor a lot. Be sure this is someone you trust and who works with you. It has to be a partnership.

But you will do fine.

Bette
 
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kasie75 responded:
Hi Hannaloren,
I am new also been on the site just a couple weeks. Just want to say I am glad you found it. I am go glad I did. There are any people on here that are very nice and have great advice. I am new to fibro also, started about two years ago. It is nice to have people to talk to who actually know what you are going through. Like you I was very active. I worked anywhere from 40-55 hrs a week, keep a very tidy house. Mother of three very active kids and I still made time to work out at least 4 -5 times a week. All of that changed to pain everywhere, feeling so tired, waking up feeling like I had not even slept. Not sleeping well, either not sleeping or sleeping like 48 hours. Brain fog, which total sucks. I am starting to do a little better, I was on some meds for fibro which none of them worked for me. My doctor put me on some sleep medication and that did help some. Getting a good night sleep is so important to your body. Steroids are so bad for your body, of course some of the fibro meds I were on are to and I had some many side effects. Since everyone with fibro is so different it is truly a trial and error thing. The first year I barley made it out of bed. Now I am will to try whatever I can to improve my symptoms. At first I just did not believe it was fibro, I wanted some hard core evidence instead of this disorder where there is no actual test for. Then I was angry, why did God let this happen to me, I have been a good person, what did I do to desire this, what mistake in my past that was so bad that I was being punished. Now I am on some meds but not as many as when I was first DX. What I am trying to do now is educate myself, making myself move around even when I hurt ( I noticed laying in bed only made me hurt more) I am doing stretches in morning and at night. I am trying to eat better, learning what I can and can't do. Learning that is ok that my house is messing, it does not make me a bad person, I can only do what I can do. I am also trying to do more natural things like diet and supplements. Mimi is very knowledgeable on this, and I am going to get my vit. D checked. Mimi said that is very important and lf you are low it can cause more pain. When I go to sleep I started listening to meditation on youtube for self healing and deep sleep. I get massage whenever I can afford it. I stopped working because I was not reliable. I was in to much pain and could not make it there at 8am and stay till five. I am also I school and want to be a nurse, I want to help others, so that is my goal so I just have to get better so I can accomplish this. Best of luck to you.
Let me know what you try and what works for you and I will do the same!
Kasie
 
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mnjeepguy responded:
I took oral prednisone for an ear problem and felt amazing. Like Nancy said, I thought I could do anything and everything. I wish it wasn't bad for long term use. I felt like the old me for a couple weeks until the treatment ended. The best thing to do is never give up. Always try new things to see what might work for you.


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