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questioning fibro
8 Replies
cornerstone - December 30

Hello all. I have been reading the forums and wondering have you all had such debilitating symptoms or did your symptoms start off gradually? Is what we have progressively get worse over time? When I was diagnosed with Fibro I was having a lot of pain in my hips, my hands ached, someone could poke my arm and it would hurt, my elbows hurt, chronic fatigue -- I can sleep for hours. Fibro fog - I hate it. The list could go on as you all know. Some days are good some days are bad, but my bad days don't sound as bad as some of you have had. I have been so exhausted that I would come home and go to bed and My hips would hurt to the point where I was walking like an old women (no offense to anyone who is a senior). Anyhow..I was just wondering. Since I have been on my medications the symptoms are much better, but they never go away. Is this the same for most? Would love some feed back.


solanadelfina - December 30

My journey was actually quite gradual, and odd. I started having just wrist pain about eight years ago at the age of sixteen. I went to a round of doctors who told me to rest from orchestra, that it was probably tendonitis. It spread to my fingers and elbows, and occasionally my shoulders would hurt. I was also having other odd symptoms that only now do I recognize as being connected, and tiredness that was more than pushing myself way too hard in school. The pain came and then would go away for months at a time.

A few years ago, it spread to my back. I'd have about a week or so every few months when it would hit and go away after going to see the chiropractor. This year it spread all the way down to my feet and up to my head, until I wondered if it'd affect the people around me with nowhere else to go :) A few months ago, another flare came and it was here to stay. Frustrated, I went into the doctor again to find out what it was once and for all and was finally diagnosed.

The good and bad cycle seems to be the new norm for me now as well. I do stretches every morning and night and am still trying to figure out how to get this faintness and nausea under control, especially while at work. However, I've also learned to be patient and take better care of myself than in the past, harness my muse for writing on the good days and rest on the not so good, and try to get in as much humor as possible. If there's any way to laugh at something, you decrease its power over you.

Short answer- gradually, and the symptoms vary on the day and weather. :)


SnowBear72 - December 30

does your back hurt like you pulled it out and it hurts to sit or walk? This is what I feel like. sometimes my hand hurts or aches my knees back neck legs. and I have this feeling of deep muscle aches and pains.


jacobea - December 30

I had this severe migraine (and, oddly, my first migraine too) in Sept 05 when I was in school-my teacher sent me home saying it was a stroke!

About a month after that, the pain began (or i started to notice it), starting in my knees and calves. Within four months, it spread up my back, into my chest, my arms, hands and wrists, which was when the teachers noticed there was something wrong. The pain was minor at first, and i put it down to stress/exertion in school, but over the past few years the pain seems to have increased and spread further. I've other developed/realised I’ve got more of the other symptoms too (possib. Reynaud’s ad fibrofog, fatigue, dizziness, morning stiffness/headaches etc).

I think it depends on the person, like with most illnesses, although fibro tends to go in cycles, like solanadelfina said. The two biggest aggravating factors appear to be stress and the weather, so every day has to be taken as it comes.

Take care :)


Amyloo - December 31

Hi, I would urge all of you to have yourself tested for Lyme disease, by a dr. that is knowledgable and a test that is specific for tick bourne illness. Not saying that is what the issue is, but it should be completley ruled out.

I was dx in 05 with fibro, in 07 with MS, and just a couple of months ago tested very positive for Lyme. Lyme is misdiagnosed all the time. Again, not saying your issues are not straight forward fibro, but Lyme is quite progressive. God bless, Amy


Anne Hillebrand - January 1

It can get worse, but read about Systemic Serous Hypoperfusion.


Fantod - January 2

My symptoms were precipitated by a disc failure in my back. The pain was terrible and since I am allergic or sensitive to medication getting me any relief was very difficult.

I have a friend who has fibromyalgia (FMS) and diagnosed myself six months after my back problem started. I went to a rheumotologist who confirmed my suspicions and started me on low doses of a couple of medications to see what I might tolerate. Its been a long journey.

After a lot of messing about and seeing a pain specialist, I have reached a plateau. As long as I respect my limits, I manage fairly well. But, I am still unable to work.

I wonder if you might have bursitis in your hips. I have it in both and it causes me a great deal of trouble even on good days. Bursitis is common in people with FMS so you should probably check into that as a source of discomfort. The enzynes in fresh pineapple are very good for breaking up bursitis. I east a lot of it.

And as you noted, the pain is certainly less than when I started but it never completely goes away. I also use some holistic medicine in tandem with conventional medicine which works well for me. Modern pharmacology is not my friend and I do better with a less is more approach. I think a common misperception with newbies is that taking a pill will make FMS go away. If only it were that simple...

I hope my comments were helpful to you in some way. Keep in touch and take care.


aharryman - January 2

I was first diagnosed about 14 years ago and really didnt believe such a thing existed (I honestly thought my doctor was making it up and that I was "wimpy"...) I had a period of time when stuff was so bad that I had fetanyl patches just to function, I had days where I walked like you describe,too. Eventually I weaned off of the fentanyl to see if the underlying problem was still as bad as it had been and it hasnt been that bad in 4 or 5 years but now I battle excruciating migraines and neck pain, and I'm suddenly having serious memory issues but hey--I can walk faster than I used to! It may sound kinda flippant but my motto (for everything)is "It may not get better, but it'll probably get different." I still have days where I feel like I accomplished something big if I just stay out of bed all day.


kiwigal - January 6

I developed symptoms after mistreatment of a minor knee injury that caused me to limp around for a while. I thought the pain would resolve but it didn;t - it just got worse and worse and worse. I also contracted chickenpox and glandular fever around this time and had previously suffered a bad back injury in my teenage years so I don't know what caused it. Medication can help a little but the pain is always there and sometimes is unbearable. I noted your description of the hip pain - it is excruciating and sometimes I hobble like I am crippled with it - I was diagnosed by an orthapaedic surgeon with bursistis in both hips and given no treatment for it - just told to walk and take hot baths - sometimes any pressure on them is awful and I cannot find a comfortable position. I also regularly wake myself at 4 int he morning in tears with hip pain. It is awful!!!



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