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An_249067 posted:
This is my first post here. I had just joined the depression group, and one of the moderators suggested that I come to this group to ask some questions. I have not been diagnosed with fibromyalgia.....yet. I wanted to ask those of you who have what symptoms you have, what it took to get a correct diagnosis, and what you do to deal with the daily struggles.
I do have a history of several major traumas that seem to connect to the information that I have read about fibro often being triggered by a major event. Those event include breast cancer and a major fall. I have been using some form of pain management for several years now, and I can get relief from some of the specifc pain, but none for the all over aches. I am terribly fatigued. I am also not mentally functioning as well as I should be, what I have read it is like the fibro fog that I have seen described. I did not have chemo, so it is not chemo brain, although I continue to be on a chemo like medication for the breast cancer. My oncologist does not feel that the medication should be affecting my thinking processes. The medication does deplete my calcium stores....so I take a large dose calcium supplement.
I just can't get past the all over body aches, the fog, the fatigue. I have recently lost my job due to the fog.....and I don't know how I will be able to find another job while I am feeling so awful. Every day that I was working was a challenge. Mornings were the worst....by afternoon I was feeling okay....then as evening came on.....back to feeling terrible. It has been like having a low grade flu for months now...that feeling when you have a fever and your bones ache. I understand that these are also symptoms of fibro.
I would so appreciate some feedback.....
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dollbug responded:
Hello and welcome....MiMi in NC...sorry that you are dealing with so many things...sorry to say that it might take a while for the doctors to figure out IF indeed you have FM...this seems to be the normal...the doctors should rule out other illnesses first...I also have chronic fatigue which is common for people who also have FM...and the fibro fog also is common for a lot of FMers...the wrath of the dragon, aka is a very mean and ugly illness...but there are all sorts of *tools and tips* that you can find that might help you cope better in dealing with *IT*...

I would like to suggest to you to ask your doctor to check your Vitamin D level....which is so important for a lot of people these days...low Vitamin D can cause some of us to have additional pain and it can also affect other illnesses as well...it is a simple blood test...but you MUST ASK the doctor to run it...as it is not yet included in the normal bloodwork that the doctors do...

I hope that you will check out the info under *tips* and *resources* that you will find to the right of this page...be sure and see them *member toolbox* which has some good things that you might want to try...

I am one of the FMers here who has figured out how to *control my FM pain* by taking vitamins and supplements and doing other things as well...I tried several different medicines in the beginning but did not find anything which really helped me without causing additional side effects and I did not need anything else to deal with...it took me a long time to find the right combination of things that help me...and I am NOT painfree, nor do I expect to be...but I can cope better than I did in the beginning...

I take the following...Fibro Response or Magnesium Malate (found at vitamin stores) a good multi vitamin with extra D, Omegas, Super B complex, Calcium plus others, as I also have other health issues...but these are the ones which help me the most with the FM pain...

I also use a heating pad as needed...Stopain Spray as needed (found at walmart)...I take a hot shower right before bedtime using lavender bath salts to help relax my body so that I can sleep better...sleep is so very important for us FMers...I also try to watch my diet and drink plenty of water every day...do gentle exercises or stretches and try to remember to pace, pace and pace even more....

Learning how to deal with FM is indeed a process....and it does take time to find the right combination of things that might help you cope better...like Nana B states...you must learn to *dance with the dragon, instead of draggin the dragon*....and eventually you will figure out how to do this...

When I first got sick I also had a lot of aches and pain...it felt like I was getting the flu...but it just never went away....

I hope you will find a good doctor who treats FM....which is so very important....there are doctors who still do not believe in this illness...even though there are millions of people who deal with it every day...

Hang in there...I hope things get better for you soon...

Learn how to keep your stress level down also, if you can...being stressed does not help our pain at all...

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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1wareaglefan responded:
Hello and welcome! The symptoms you describe do sound like fibro to me, but I'm not a doctor. I was dx by a rheumatologist. I got my GP to refer me. He did lots of x-rays, blood tests to rule out other things, he asked a ton of questions, then did the tender point test. I passed with flying colors, unfortunately.

Some neurologists are now diagnosing fibro, plus some good GP's. I'd make an appt. with your doctor and go from there. Also it might be helpful to write down your symptoms in much detail, including pain locations and duration, tiredness, depression, insomnia, any anxiety, mental fog, etc. Also write down how all this affects your daily life.

I wish you the best, and I hope you get relief. I've found that what works best for me is to treat my symptoms. So I take an antidepressant, muscle relaxer at night, and pain pills during the day. These 3 things, plus lifestyle changes have helped me keep the pain from screaming at me. I still have pain everyday, but it's at a more liveable level.

I hope this helps. Keep us posted, ok?

Elizabeth
 
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crystalscats responded:
I had some stresses all at one time, within months of each other. I too thought it was depression at first, however I am a very positive person. I went to my GP who knew I don't complain. Did blood work and said your tests are strange and can be a few possible things or not? But said I needed to see a Rheumatologist. I did not like the first one, he was old and set in his ways.


So off I go to find a doc I like. I wanted younger doc as they seem to know more about Fibro which my GP suggested it might be with other things. He tested my vit D, 12 at the time. Low! Then trigger points, near bout jumped off the table at a few! LOL Said I had Fibro go home read about it and go to WebMD. So glad I did. More tests said see you in a month.


Go back and tell him yes I loved WebMd and verified a few weird things I thought were just me others had too! Smell, Fog, Muscle spasms, TMJ and on and on. Said well I have more news for you, not just Fibro said I show signs and tests positive to Lupus as well. We already knew I had R/A since teen.


Well all this seemed at the time too much for me. I too lost a wonderful job I loved and boss I loved. I tried to work again shortly afterwards and could not. Doc said get well first, let us find what cocktail works best for you! As we FM'ers all know none of us are a like and what works for one, not another....


Well feeling better and I am actually starting a new job next week. Not what I was making before but less hours too. Lot less stressful as well. It is my come back into the work force to see if I can work? I widh you luck as this is the start of a long road.


Crystal
 
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Survivor2007 replied to dollbug's response:
Hey Mimi....thank you for your reply. I do take a good dose of Calcium with vitD.....my cancer med takes a lot from my bones, and vitD is highly recommended for preventing breast cancer and breast cancer recurrence. I was on Opana for a short time, did not like the feeling. I was on Effexor for several years as treatment for the intense hot flashes brought on by the cancer treatment and a preventative full hysterectomy. After falling and causing compression fractures in several vertebrae, I switched to Cymbalta and have been on that for over a year. It helps, but not much. I have reviewed the information about the "trigger points".....and yep, have them all. I have been very sensitive to pain for most of my life. but it has seemed that since I began the diagnosis and surgical procedures for the cancer, it has gotten worse, much worse. I have taken Trazodone for sleep for several years as well. I have really been at a loss to understand what is going on with my body. It has seemed like this whole constellation of issues that individually would just be difficult or inconvenient is starting to gel into something....and I think Fibro is it. It is hard.....so much of it feels like I am being lazy, or not motivated. So, I am having a hard time getting my head wrapped around this. The last thing I want is another health issue.....but at least if I am able to get this diagnosis, I will know what I am dealing with and can feel more empowered to learn about it and what I can do to treat it. Again, thank you for your reply....hope I didn't get too wordy....but haven't really talked to anyone about this.
 
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Survivor2007 replied to 1wareaglefan's response:
Hi Elizabeth, thank you for your reply. I will definately make a list to take to my doc at my next appointment. I take Cymbalta, Trazodone, and Oxycodone. The pain seems to come and go, the sensitive spots are always sensitive, just sometimes more than others. The fatigue is relentless, as is the brain fog. I could get a massage every day and my muscles would still feel like they are in a knot. Jeez, I don't want to sound like I am whining....and I am afraid that others will not understand this and feel that I am being lazy. I do hope to get a diagnosis.....I really don't need another health condition, but at least with a diagnosis I can begin to pursue finding the right combination of medications and activities that may help....and be able to explain to myself and others that I am not lazy, that I have not lost my intellectual skills. This has affected my home life, but more importantly, it is truly affecting my ability to work productively. I have been in my career for almost 30 years, and it is very unsettling to not be able to do the work I have been skilled at doing. My mind just can't function at the pace that it needs to....very frustrating and very costly. My not working is causing me a great deal of stress, and causing my family a great deal of financial hardship.
Again,thank you for your reply....I will keep posting.....
 
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Survivor2007 replied to crystalscats's response:
Thanks Crystal, I wish you luck with returning to work. I will be seeing my doc in a few weeks, and will be discussing all of this with him. As you can see with my replies to Elizabeth and Mimi.....I have really only just now started to put together the symptoms and realize that this is reallyl probably Fibro. I know this is the start to a long road.....but I think I have been on this road for quite a while now without knowing it. My doc has run all kinds of tests over the past year, and maybe if he and I can focus on this possible diagnosis, the past tests will be included in the diagnostic process.
Again, good luck with the return to work....
 
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xperky replied to Survivor2007's response:
Hi Survivor,

Welcome to the site. I share your history of breast cancer, and understand how going through that is hard on us. It is great that you are a survivor!

Your symptoms sound a lot like FM to me, but do continue to see your doctor periodically to look for any possible trends and to update your symptom list with him.

It's so hard to accept the loss of job and ability to work and feel productive. We cope by redefining our expectations and trying not to compare ourselves to our "old" selves. Remember to pace yourself so you don't experience the ups and downs of overdoing on a good day and being knocked down for a few days.

You sound like you are approaching this logically, and coping pretty well, so that's all helpful for you. I hope your family understands too.
With Compassion,
Margaret
 
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Survivor2007 replied to xperky's response:
Margaret, thank you so much for your words of comfort. With you also being a BC survivor, I know that you truly understand the issues of the new normal. It has been a rough road for sure, but I am pretty much at peace with the cancer....it is what it is, and I am doing well. Of course, remaining on aromatase inhibitors has an effect on my body....so it has taken a while for me to really realize that I may be dealing with something other than that recovery process.
The loss of work, and the feeling that I am not capable of doing what I have always done is difficult at best to deal with. I think that I need to have a diagnosis to be able to understand myself....to let myself off the hook.
I will post as I go along....it has been so helpful today to have had some responses...to get some feedback and some insight about what I am feeling and dealing with.
Blessed Be


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