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Cynseel1 posted:
I would like to hear from those that have had FM for a long period of time. I was just diagnosed, does the pain get worse as time goes on?
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dollbug responded:
Hello Cynseel and welcome.....MiMi in NC....actually I think it just *depends*....there are things which you can do though to ease your pain....and then there are *things* you can do to increase the pain....NO JOKE here....it just depends....can you *control stress*? Do you have a *positive attitude*? You should learn how to pace, pace and pace even more.

You have found a good FM support group here and I am sure that you will get lots of good info....check out what is under *tips* and *resources* and be sure and read the *member toolbox* as well.

It does take a trial and error process....which does take time and effort. You should also remember too that what helps one person may or may not help you....only you will know when you have found the *right combination for you*....you should allow at least 6-8 weeks of whatever you decide to do though....before you make a decision as to whether or not what you are doing is actually helping you cope better.

Vitamin D.....so very important for a lot of people these days....be sure and ask your doctor to check this...low Vitamin D can cause some of us to have additional pain and it can also affect other illnesses as well.

Learn all you can about the wrath of the dragon, aka FM...as the more you know the better you will cope...anything and everything though is a process....there are no quick fixes...that I am aware of anyway.

Heating pads are my best friend....drinking plenty of water each day and watching what I eat....also helps...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. I take the following:... multi vitamin with extra D...(I take Source One brand from walmart 50 )....Omegas, Super B Complex, Fibro Response and Magnesium Malate (found in vitamin store-I take one of each)....Now I do want to add that what I have found over the years....vitamins and supplements can also vary just like prescriptions do...not all of them are alike.

Getting enough sleep each night is also very important and keeping a schedule of sorts also helps me. Taking a hot shower right before bedtime using lavender bath salts also helps me when I am really tired and/or hurting...this helps my body to relax so that I can sleep better. I also sleep in a recliner...(not by choice though)..

OK...this is just a fwe things that might help you. I am sure others will chime in also.

Take care and good luck.


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

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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BetteK responded:
Cynseel, we are all different. According to the literature, there are supposedly people who get better. Also, according to the literature, there are people who do not get worse.

In fact, fibromyalgia is changing your neurological system. It is amplifying your response to pain: If a ping pong ball drops on your foot, it feels like a bowling ball. It is also changing some of the receptors that used to feel other sensations than pain so that these receptors now do feel pain and send the pain message to your brain. At the same time, you are not getting the restful sleep your body needs to heal itself.

I do not mean to be pessimistic, but unless there is some new addition to the mix--a med that works for you, a relaxation technique you can depend on, a physical therapy routine that helps--your FM will almost have to get worse.

Throughout your life, you will have to make modifications. You will have to budget your energy and spend it on the things you consider important. You will have to learn how to live your life in new ways.

You will have many good days. You will have some bad days.
Your attitude, the way you react to stress, your ability to surround yourself with caring, upbeat, supportive people, and even luck will determine the quality of your life.

I have lived with FM since 1972 with a diagnosis in 1990--the first year there was an FM diagnosis. That's a long time. But during that time, I raised two wonderful sons, started college and earned 3 degrees, taught handicapped adults, and had a blast doing all these things. I just had to pace myself, to find a medical team that trusted me as I trusted them, and do my best--which on some days is pretty poor.

Fibromyalgia means fatigue, pain, and a host of wierd other syndromes throughout your body. It does not mean the end of life or love or laughter.

BetteK
 
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Cynseel1 replied to dollbug's response:
MiMi; Thank you for taking time to reply to my inquiry Sleeping ( or I should say not sleeping) has been an issue for a while now. I find Zanax helps me to sleep when I'm desperate to stay asleep. I have taken steps to manage stress better, ie; attend a midday bible study at my church, cutting back on my work hours each week and forcing myself to do more cardio at the gym. I'm even going to try a Yoga class! I appreciate you sharing with me things that you've found helpful. Cynseel
 
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Cynseel1 replied to BetteK's response:
BetteK ; Thank you for your response. I appreciate your honesty! Seems like you have accomplished a lot throughout your life despite having FM. That's a huge encouragement to me Cynseel
 
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ajnsmom responded:
I got fibro in November 2010. In my case the pain was pretty constant for about 6 months, then let up enough to have a more normal life. The flares come and go, but once you find the right meds, I think it will get better for you. Once my doctor (rheumatologist) helped me find the right meds, in my case amitriptyline and flexeril at night to sleep better and Gabapentin 3 times a day, the pain would let up enough to work during the day. I would still feel the pain at night after work (desk job) and upon wakening in the morning. But I went thru a remission for about a year. Now I'm in a flare, and hadn't had one for a long time so this took me a bit by surprise. Stress can bring on a flare, and I think that's the cause of this one. I pray that you will find the right meds and ways of functioning that will lessen your pain! Oh, my sister bought me a shawl to wear because I still can't reach behind me to put on button down shirts and sweaters and coats, so at least now I can stay warm in the winter. I just hold it in front of me and throw it backwards to get it over my shoulders. It's little things you can do to make life easier. In my case, I keep things where I can get to them without having to do a lot of reaching. Dr. P mentioned in one of his articles to keep your arms close to your body. All the reaching and such can really aggravate pain. So anyway, you'll get a lot of good tips on here. I pray you will feel much better soon!

Linda
 
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booch007 responded:
Cynsee1,

I have had this diagnosis since 2000 but had it before without label and I have to say it is a tough road. BUT I am better now then i was then. So any things that were hard for me I figured a tool for and fixed it so they are small in the pile of symptoms that I feel now. Education was a big thing for me.

I have age changes now too, so that is part of the considerartion in feeling that maybe this is a bit worse. I don't think for me it holds true.

I use trigger point injections as a main therapy, then I take a muscle relaxant, a pain med and a SNRI elevator....Vit D, B Complex, CO Q10 , Magnesium twice a day and a plethora of water to hydrate my poor motor.....all together I can say I have a life.

As an ole ICU nurse I will tell you that everyone is givien something to challenge their life. This is ours. Some have more then one thing. I am happy with just this...........it is better than other things I could have been challenged with. .

Look into the book I suggest to so many as it is easy to read and you learn alot of self help things.
FM and Chronic Myofascial Pain, a survival manual by Dr Devin Starlanyl. It is 19.99 on amazon.com

Good luck in this path. Stay here and learn from the fmily and how we help ourselves.

You might want to look in the toolbox too. It is to the right under resources, copied by Caprice for the board to hold for all time. Long read but very useful for tricks. Dr P up on the right also has so much information and humor in this mess we deal with.

Good luck for me........................Nancy

Bhttp://forums.webmd.com/3/fibromyalgia-exchange/resource/4 This is the short cut to the toolbox.....
 
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Cynseel1 replied to ajnsmom's response:
Hi Linda I'm happy to hear from you, thanks for responding. I am totally with you in that I have been wearing a shawl because it hurts my arms/shoulders to put on a coat in this end of winter season. I am leery of starting medication tags there are so many negative side effects . I have to meet with my Doc in a couple of weeks once all of my other test results are back. I take a Zanax to help me sleep. Have you found any type of medicinal cream that relieves some of the pain in muscles ?

Cyndi
 
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Cynseel1 replied to booch007's response:
Hi Nancy Thank you for taking time in responding. It helps knowing there are fellow sufferers to talk to and gain knowledge from. Thank you for sharing the Toolbox and book you recommended. It's interesting to hear how this illness starts out and develops over a period of time. I've had a sore neck for years, and have spent hundreds of dollars buying different pillows! Then lower back pain, thought it was to do with a spinal fusion that I had back in 2005. In 2011, my right elbow started hurting, had surgery last July only to have no improvement. Within the past 6 months, I've developed pain in my left elbow, both shoulders and down my upper arms, upper back, weakness down my leg, headaches. Not to mention haven't been able to concentrate on reading anything or retaining what I've read and thought I was loosing my mind! It all makes sense now. And I'm so happy to have found this website and being connected to a great support network! Have you tried Yoga? I'm going to try a class this week. Cyndi
 
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booch007 replied to Cynseel1's response:
I said I was going to try yoga but what my mind says and what the body does at times are NOT the same!!

I do listen to upbeat music almost all day...I would sleep with it if I could!

As now I post shots and sore a heck, so in the morning I will have my iPhone nearby with pandora on in the bathroom as I ready for the day...music and humming away begins my distraction process. Meds in and then coffee and the computer to wait for some release.

Then I am up and OUT...

Gosh, I hope you get your toolbox put together and are doing ust so well for a long time. You have more power then you know....just believe it and don't stop fighting to not lose an inch more of function. This devil is not going to win over me***.

Hugs, Nancy B
 
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ajnsmom replied to Cynseel1's response:
I tried some generic cream with Capsacin P in it on my arms and shoulders. (not sure how to spell it) It helped some, and Icy Hot patches and similar products worked some. I remember spending a lot of time under the heating pad, so that soothed the pain too. I now have a heated throw that I use when I'm in pain.

I know what you mean about side effects. Fortunately I haven't noticed any in what I'm taking other than drowsiness in taking the musle relaxant at night, which works for me, because I take it before bed. I hope you're having a good day!

Linda


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