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Just not getting any better...
6 Replies
RJ99 - November 11

Hi everyone,

I am new to the forum. Thanks in advance for your support!

I have had fibro for a few years, but it is steadily getting worse. I also have degenerative disk disease, arthritis, and several pinched nerves in various places.

I read so many articles and books about how "you too can get better and enjoy life again... " even with fibro. There are stories of people in terrible shape who now seem to live normal lifes. I have tried everything - meds, diet, exercise. I am not getting better, just pretty much maintaining - although my pain seems to continue to worsen. Some days and nights are not as bad and I can get a few things done. Some days and nights are awful.

I am not working since May, the fibro fog and fatigue are the main reasons. I was a program manager and managed multi-million dollar projects. I also traveled. I was no longer able to handle it as some days I had no focus and memory sucked - you don't want to mess up with the client's money.

Is this the case with others - that you just try to maintain and not really improve? ... and we just don't see any articles about it? Or I am not doing something I should be doing?

I have an understanding rhuematolgoist and am happy with him. I am taking gabapentin, muscle relaxers, pain killers, mirapex, an SSRI, and nuvigil for fatigue. I may have forgotten something :-)

I have tried lyrica, cymbalta, and savella, but have discontinued them due to side effects. I am wondering if I should go to a pain clinic to help deal with the pain. I think I need my pain meds bumped up, but my current pain doc does not seem to willing to do so.

Sorry this got so long... not my intention. Mostly just wondering if others are not getting better too and just have to accept that and learn to live with it.

thanks - RJ


Canada17 - November 11

I was diagnosed in June of this year. However, after much research we have determined that I have always lived with FM, even as an adolescent.

It has gotten progressively worse, even since June. I have accepted the fact that as my body gets older and loses it's ability to heal itself as quickly, I will feel more and more pain. That being said, currently FM is not considered a degenerative disease. Major illness or injury can make it worse. I was in a few car accidents and after childbirth things progressed. Plus, stress plays a huge role, and unfortunately the pain we feel can cause us stress and it becomes a vicious cycle.

I think seeing a chronic pain specialist will help you. They specialize in helping people cope with pain with more than just meds.


Keturah - November 12

Hi RJ,

I have been a FM sufferer for 10+ years now. The first two years I also had Chronic Fatigue. I crawled out of my bed in the mornings and slowly made my way to the kitchen with great difficulty...because of pain and stiffness of my joints but also because of the fatigue. I was fortunate to work the afternoon shift at a local nursing home as a PSW and so by 2pm I had managed to get a grip on things and off to work I would go...would completely veg when I got home, but I did get my days in. I was a single mom and continued to be up until 2007 and not working was not an option. I soon learned that this was not going away and the only way for me to deal with it was to accept that pain was now going to be my life long friend. I say friend because if you treat it as an enemy, it just makes it harder on you...I became very proactive and asked alot of questions. My doctor was not that knowledgeable on the subject but was willing to listen to my thoughts and ideas. In my research I found a great solution to my Chronic Fatigue....a wonderful product call Royal Jelly. It is the honey that the worker bees bring back to the hive for the Queen Bee! It is all she eats while the other bees eat just the ordinary stuff!! Her lifespan is 7 times longer then the other bees...I took this for 6 mos and have not suffered from Chronic Fatigue since. I do still suffer from exhaustion from lack of sleep when I take myself off of one sleep aid(body builds an immune to it)and after few weeks start another sleep aid. I try and give myself a break in between these sleep aids (mostly antidepressants ranging from 25mg to 100mg.)

As for the pain, I have developed a very high tolerance for it as I have a violent reaction to most pain killers. I took the atitude years ago that although FM is HUGE, it would not control me. I have had seasons of ' hopelessness' but they do not last long. My faith is what I turn to and what gets me through. I plan my days as I would have before FM. I plan my holidays every year as well..I drive 1500 miles to visit my folks and stop every hour or so. I will not let FM dictate to me what I can and cannot do..Stubborn...must definitely!!! I still work at the Nursing home full time, but work days now. My co-workers all know about my illness and support me. They laugh at my Fibro Fog and do not expect anything different now. I did have to take 3 mos off last January because of the pain and I was not able to walk without a cane. My spine now tilts to the left and because of the hundreds to muscle spasms I have shrunk a few inches over the years...but I was tall to begin with...:). I am going to a chiropractor to get that least somewhat!!
RJ, you are in for a fight of your life and it will seem sometimes a fight for your life but you can do this..Let yourself rest on the days you need to..if you can find a comfortable position to rest!!. Laugh at the fibro fog! And cry when you want to or need to! There is never a day when I am free of pain, stiffness or foggy, but on the days I am not so bad I go for the gusto..I appreciate those days so much and very thankful for them. Join a support group if you can and surround yourself with positive loving people. I hope my story helps you in some way... God Bless.


Fantod - November 12

Hi RJ99 and welcome to the group. I have Fibromyalgia (FMS) and degenerative disc disease and osteoarthitis. I pretty much know firsthand, where you are coming from.

FMS is one of those damnable things that you just can't fix. If you could, I'd be first in line with a mighty big I think most everyone who actively participates on this forum will agree that the best we can all hope for is maintaining some semblance of normality. And, on some days it is easier said than done. All of those pitches you are reading want one thing - your hard earned money and you will not get anything worthwhile in return.

I have a couple of ideas for you to consider. First of all, have you been tested for vitamin D deficiency? That is one of the newest options and many people with FMS have very low levels which would cause pain. Another option is checking for gluten sensitivity. Many people are sensitive to gluten but not enough to have full blown celiac disease. The most accurate way to test for gluten problems is using a stool sample as opposed to bloodwork. A problem with gluten will also cause widespread pain.

One of the things I use for troublesome areas like my lower back is the Flector Pain Patch. This patch only works where it is applied and does not get into your bloodstream. It will not get you high. This is a prescirbed medication. You can cut the patches up to make them last longer. They are worn 12 hours on and 12 off. I find them extremely helpful.

For memory issues, my nutritionist recommended phosphatidylserine. The best price I have found is through Puritan's Pride online. They call it "Neuro-PS" and it comes in varying strengths. I use 200 mg as for the most part, my memory seems to be intact. Be sure that you understand the risks associated with taking Neuro-PS or any other supplement.

I have to wonder about your pain levels. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain and, in my opinion, more issues with the ever popular fibro-fog. You should be taking Amitriptyline or something for sleep which is a crucial part of treating FMS. You might also want to consider a sleep study to see what else may be going on such as sleep apena or another problem.

And finally, I am going to go over diet just for good measure. You should not be eating any deep fried foods, lunchmeat (nitrates) or aritifcal sweetners (including Splenda). All of these items may increase your pain levels. If you need a sweetner use Truvia or Sun Crystals which are made with the nontoxic Stevia ploant. You can find them in the grocery store along with the other sweetners.

I have both a rheumotologist and a pain specialist. They work in tandem with one another. I've found having two heads to figure out what to do as I am very intolerant when it comes to medication very helpful. You could call your local hospital physician referral service and ask them for a recommendation to a pain specialist with an interest in FMS. My pain specialist was able to sort out the pain emanating from my back from some of what we assumed were byproducts of FMS. That in itself made the visit worthwile.

I think the main thing in learning to live with FMS is to be grateful for anything that you can accomplish no matter how piddling it might be. Focusing on that instead of all of the stuff I can no longer handle has made a difference. You just take it one day at a time. I have no expectations other than to be showered and dressed by the end of every day. That is my plan no matter how horrible I may feel. It might take me all day to get there too. Anything else that happens past that point is gravy. I have developed interests that I enjoy that don't require a lot of energy. I work on genealogy and read. I have learned to ask for help when I need it and not feel embarrassed. I have also learned to say "no", mean it and not feel gulity about it. My latest and greatest includes getting a wheelchair and being approved for Social Security disability through Allsup. I think it is more productive to be open to the possibiliites than ruminate on my losses. here endeth the lecture...

I hope that something I said is helpful to you. Take care and God Bless.


Noca - November 12

Go to a pain clinic, at least here the doctors at the pain clinic are willing to give me whatever I want for my pain and in large doses too, which other wimpy GP's wouldnt touch with a 10 foot pole.


axxie - November 12

I see the pain clinic, and as a practice, they teach you what secondary pain is, and how to cope with it. They are very supportive and have the available resources, that individual doctors don't have.

Also think about talking to a professional, helps and takes a load off your shoulders if you know what I mean.


RJ99 - November 15

Thank you everyone for your input. It is very helpful. I have also been reading other posts and recognize I am definitely not alone in this hardship.

I plan to look for a pain clinic and/or pain therapist that is not too far from me (north GA).

Someone asked about sleep. I did forget - I take lunesta 3 mg most of the time, but it does not always work too well. I did not take one last night and have been up since 1 AM! oh well - maybe I will sleep tonight.

Thanks again - RJ



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