Fibromyalgia Community
3.74k Members
Avatar universal

Has anyone's Fibro progressed?

I was diagnosed 12 years ago with Fibromyalgia and have dealt with the terrible pain and fatigue associated with it -

It was only last year that I began having all these new symptoms of numbness, buzzing, tingling, weakness, facial pain, twitches . . .

So I am wondering .  .  . does this sound like the typical course of FM?  Is anyone else's FM  getting worse with time?

I have always had a healthy lifestyle regarding diet and exercise - plenty of rest too .  .  .  but now I am needing to turn to meds to treat the symptoms.

16 Responses
Avatar universal
Yes, Julia, I was diagnosed about the same time you were and it has progressively gotten worse.  At first I would have a flair up that would effect maybe one area, hips, shoulders, etc.  Now there is no part of my body that does not hurt and I can not get enough rest.  When I get up all I think about is when can I go back to bed.  

I have been on meds for awhile but have not found anything that gives me any relief.  I only happened across this web site a couple of days ago and if nothing else it has helped me to realize I am not alone, I am not crazy and I am not a hypochondriac.  That in itself made me feel a little better.  

I can only hope and pray that now that they have actually approved a drug for the treatment that there will be more research to determine what causes this terrible disorder.  

I wish you the best and I am so sorry that you too suffer from FM/CFS.
Avatar universal
I have good news! I went to a seminar on fms at the university of michigan and a leading doctor their was talking about gene therapy. They already have this for the blind. In less than five years, not only are drug companies going to have more drugs out for fibromyalgia, but they will be able to take your dna and test it to which drug will work best for you!
Avatar universal
Hi Julia,

There has been research that has found mycoplasmas and other stealth pathogens in CFS, fibromyalgia and patients with other conditions and autoimmune disorders. I'm actually currently being treated for this right now and getting better. If you have mycoplasma, it is bacteria and so it multiplies. That is why so many of us get worse over time.

For more information and how bacteria may affect our genes, google, "Amy Proal" + "bacteriality" and you will find her website.

All the best,

187722 tn?1280493386
Many physicians feel that fibromyalgia is an excuse to be lazy.  Our research and the medical tests are lacking to properly diagnose this condition.  It would seem that doctors would look to the one specific body organ which controls calcium in your body (4 parathyroid glands).  I have hyperparathyroidism, even after surgery two years ago.  I have "bone spurs" in the back of my neck.  Primary hyperparathyroidism removes the calcium from your teeth and bones and deposits the calcium in your kidneys (kidney stones), bladder, blood vessels, muscles, and body organs.  The doctors at Mayo Clinic tested my hydroxyapatite crystals, which are clinically elevated, but did not do anything with the results.  My mother and grandmother had these same problems, which their doctors only prescribed pain medicine.  It would seem that doctors would test the parathyroid glands, blood, and urine to see if Hydroxyapatite deposition disease was contributing to these problems.  Doctors only look to simple, easy solutions, such as cancer as the culprit.  Only through research and tests for actual contributing factors to chronic pain, fibromyalgia, arthritis, etc.  can this disease be stopped.  Even with slightly elevated parathyroid levels, many doctors do not recommend surgery.  You must become your own advocate.  If doctors would study and requests specific blood/urine tests, MRI/CAT scans and find the cause, then our health would improve.  

I do not mean to cut all doctors, as I have a few that are excellent.  Many research studies are not focusing on improving the quality of life.  We all want an easy fix, but specific tests are needed to prove the problem.  Many people have chronic pain, especially from physical injuries, which are much easier to document.  Doctors want to say that you are depressed and often prescribe antidepressants.  While people can become depressed, due to continued decline in health, there always is a geniuine reason (not psychosomatic).  Many years ago, I met with a "specialist" in Augusta, GA.  He talked with me for approximately 90 mintes, never once ordered any medical tests, and decided that I only needed an antidepressant.  Two years ago, I had surgery to remove four tumors in my neck!  If you cannot get results from the first doctor, then you must study, research the problems, and locate a medical research facility/hospital in hopes of getting relief and a cure.  Request your medical records and find someone with experience.
Avatar universal
"Many physicians feel that fibromyalgia is an excuse to be lazy.  Our research and the medical tests are lacking to properly diagnose this condition"

This is the problem.... removing the doubt is part of the cure. Physicians aren't keeping up with the latest research on fibro and/or CFS. To my understanding, they still aren't teaching physicians about these illnesses in medical school ! One of the reasons why this is because they are debating whether or not which specialists should see these fibro and CFS patients.

It is important to rule out every possibility before you get a fibro or CFS diagnosis. But if you ask me whether or not fibro is a real condition... there is no doubt in my mind. And there is a lab test that is still in the experimental phase that can make the diagnosis. Check out "Red Labs USA" for more info.

Avatar universal
Yes Julia this is a normal progression. I had been experiencing those symptoms for about a year. Recently my doctor put me on Lyrica, and that has helped a lot with those symptoms. Being put on those medications, I am no longer taking Celebrex, just taking Eleve as needed, I don't take Cymbalta and Ultram anymore either. I am so happy to have taken off those meds and I feel better and I am feeling I can actually exercise now.
Good Luck.
Avatar universal
"Many physicians feel that fibromyalgia is an excuse to be lazy"

You know one important thing I forgot to add in response to this comment is that I believe the PHYSICIANS who refuse to do research on fibro and/or properly diagnosis their patient, are the ones who are lazy.

Avatar universal

diagnosis = diagnose

(brain fog ---- common in fibro & CFS patients)  =)))))
Avatar universal
Thanks so much for your comments.  When my GP referred me to the Mayo Clinic earlier this year I was relieved thinking we would get to the bottom of this and surely get more answers than  just a "re-diagnoses" of Fibromyalgia - and "come back if you get worse."

I'm glad to hear that efforts are being made to treat the actual condition and not just the symptoms.

Avatar universal
sounds normal to me. every time the doctor tries a new medicine or new therapy, it seems to start out ok, then things get worse than they've ever been.
497513 tn?1216842090

Not sure whether anyone read my other posts. I have been feeling extremely lonely.  I have overall pain, tingly and numbness down my arm to fingers and butt to toes, etc.
I have been asked if I was ever sexually abused when younger. I am told dr. would like to set up an appointment to test my IQ.
My pelvic area hurts, I feel like I have a UI infection yet when tested normal. It does gradually go away on its own. But does return. VERY tired. FOG headed. Don't remember getting from point A to point B. Headaches. Been there done it with PT became stiffer. Just finished up aqua therapy. Discontinued because could not tolerate water. Felt sea sick and exhausted.
Had MRI done on Cervical, thoracic, Lumbar, brain. Normal.
Blood work, Lyme, lupus, rheumatoid arthritis-normal
X-Ray on Cervical-severe whip lash.
I am going on 40 but feel like I'm in my 90's.
My frustration is with doctors who want to send me to psychiatrists and say my overall pain could be secondary to my injury. I am not crazy.
Thankfully I have a good therapist who know me and tells these doctors that I would not be in her office if it was not for the fall and workers comp making me go.
My pulse rate was 140
I too have been on many different medications but because of my chemical sensitivity I can not tolerate them. I went from a person NEVER having to take any medicaions or ever being sick to this.
I've been on, Xanax,predinsone, Skelaxin, Nortriptyline, Meloxicam, Cymbalta, Lexapro, Diazepam, Norflex, Amitriptyline, Ambiem, Lyrica, Tramadol, Risperdal, Darviset, Vicodin, percoset, Oxycoton, and vitamins, A, C, E, Magnesium, Acia juice, Fish oil.
I am grieving my "old" self. I am not crazy but these doctors make you think you are. I am angry this is happening to me and no one around me seems to understand.

Can anyone relate?
Avatar universal
"My frustration is with doctors who want to send me to psychiatrists and say my overall pain could be secondary to my injury. I am not crazy"

You are among friends here. And many of us have experienced the same frustration with physicians. I'm actually one of the lucky because I really haven't had many bad experiences with doctors. However, it took me MANY years to get a CFS diagnosis and that was awful. I knew something was very wrong and it wasn't just "severe allergies".

I understand about the grieving. One of the members here even wrote a post on it. My friend who has CFS mentioned to me on the phone the other evening how many of us with chronic illnesses have been labeled by our physicians, friends and even relatives as "invalid". This is what needs to change in our society.  I understand what she means because I am really a positive & happy person... but it isn't okay for me to talk about my illness or even my treatment with some of my friends. However, it is okay for them to ramble on about their problems with their kids, job or marriage. I'm so glad we have this forum to meet other people who know what we are talking about. In my mind, we are all HEROES for dealing with what we have to deal with on the daily basis.

I'm sending you a link that can help you find a physician in your area who is familiar with fibro & CFS. After you get  proper diagnosis and feel better.... consider visiting your other physicians and telling them how much better you are.  ; ^ )

Avatar universal
i totally relate...........no one understands what ur going thru.  they say that they do but 3 mins later they're treating u like they've already forgoten whatt ur goung thru.

i'm getting worse..severe migranes, more intense pain, especially in the am when i have to get up @ 5 am to go to work for 12 active hrs.
what's the right way to do disability?
Avatar universal
Iam in a lot of pain like you stabbing throbbing facial numness thats whats bothring me Ii has being there most of the day. got to go hands are tighting as i write this my angles to and skin tighting keep in touch love dorothy.
Avatar universal
I don't know how your disability works in the States as I am in Canada. I went to a lawyer & asked him how to go about it. He said the first step is to go to your doctor & say I spoke with a lawyer & he recommend I tell you that I feel I can not continue on like this. I am in so much pain & being at work is making things worse. I know as soon as I mentioned lawyer my doc said this will be long term. I am lucky as up here I am entitled to 15 weeks of unemployment & I have long term disability at work. I worked at the same place for the past 18 years & busted my *** for the company. I am going to pat myself on the back now as they are missing me, but I did my job & everytime someone quit they didn't replace that person they just kept throwing all the extra work at me. I worked in a office and before I left I could hardly walk, sitting I couldn't stand it for more than an hour as the pain in my spine was excrutiating. My hands are so sore now I can hardly peel potatoes for supper anymore. Sorry for the babble about myself. I recommend you see a lawyer. Here it cost me $250. but it was well worth it. The lawyer will tell you what steps to take for going off of work. I have had this monster for about 24 years now. The first bout lasted about 3 weeks, then it didn't hit me again for about 6 years. That one lasted 3 months a few years later it hit again for about 3 months. This time it has been since October & I am still not better, not even because I am off work. I have gotten some relief from not working as I had to get up at 4 am drive for 1 1/2 hours to work, work for 9 hours & then drive home another 1 1/2 hours. Then make supper, do dishes make lunches..... you know the drill. From October to February when I finally couldn't take it anymore I was averaging about 3 hours sleep a night which was also a killer. I live in a 1700 square foot house (not that big) but it takes me the whole week just to clean. I could never handle work right now. I am on 45-90 mg of morphine per day depending on what kind of day I am having. I have to take 40 mg of pantoloc for my acid reflux & 75 mg of amitriptoline to help me sleep which does sometimes help not always.
Well I best stop babbling, hope to hear from you soon.
Take care of your self because if you don't nobody else will.
Avatar universal
I also have been wondering if my symptoms are caused by Fibro. I am 59 years old. I've been dealing with periods of widespread pain since childhood. Then, in the past few years, the pain centered more in my neck and lower back. 2011 was a very stressful year and suddenly in September I experienced numbness, weak limbs, pounding heart and mild nausea. I went to a clinic that referred me to a neurologist. Since I also had a visual disturbance in one eye, he tested me for MS. Negative. There were other tests, also negative. He gave me no diagnosis, but put me on 25mg Nortriptyline daily. I am doing better now and this week I actually made it through the supermarket without using the electric cart. I want to go back to work, but am still having too many issues. I want to get off this med, but I'm not sure if it has caused the improvement or if I've gotten better on my own. This has been very frustrating.
Have an Answer?
Didn't find the answer you were looking for?
Ask a question
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child
This article will tell you more about strength training at home, giving you some options that require little to no equipment.
In You Can Prevent a Stroke, Dr. Joshua Yamamoto and Dr. Kristin Thomas help us understand what we can do to prevent a stroke.
Smoking substitute may not provide such a healthy swap, after all.