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I am really interested in the way this disease progesses. For me it began 7 or 8 months ago. I began waking up with severe pain in my arms. After a few weeks I could not support myself to get out of bed. But as the day went on I got better and the pain was just a dull roar.

I went to the Doctor and she gave me some Panafcortelone tablets that worked a treat instantly. I went back in 3 days as requested and she told me that now i needed to slowly get off them.

So over the next few months I reduced the dose and the pain gradually came back. It began to go to my legs, hands and body. So I began to think about pain and being a bit religious wondered about any benefits that might be possible. I found I could increase by pain tolerance considerably and still be quite happy.....for a while. But then depression would set in after a couple of months, so I would increase my tablets. That worked. I found I was beginning to see other people in a different light if they looked a bit distressed - and I found I could tell by their body language if they were hurting. So I found that quite powerful to see that I could have compassion that previously had gone unnoticed.

I also found it was very important to experience alot of pain in the first hour of getting up, then the rest of the day eased off and i could continue working - my job goes from 8am to 1pm each day. The nights are the worse because it wakes me up and i lose sleep. The intense pain catches my attention, so if my legs hurt the most, then i forget my arms or hands or other less painful areas. So now after 8 months what can I expect next? I would really appreciate your comments, as I cannot stay on the steriods for ever. I realise I am a bit niave at this, but its a big step for me to admit all this stuff.

Hello Helen,

Welcome to the group, so sorry you are in so much distress. We understand how you feel, and we also know of the burst of compassion for others that seems to grow from our own personal pain.

As much as we are the same, how this affects us is so different, different Doctors, treatments, responses.

I have little experience with steroid treatments, so I really cannot comment there. I just hope they are helping, and a lasting treatment program is pending. Sometimes we have to ask for the next step to be taken by our Doctors.

It is a HUGE step to admit this to yourself, much less to others, and many others will relate.

It is hard for any of us to tell you what you can expect with a condition that is so unexpectedly unpredictable! I just hope that you can soon find comfort.

Stay strong,


Hi SK,

Thanks for your reply. I am wondering if others would be willing to share their testimonies in brief, not that they may be the same, but that I can get a feel for how all it might show the differences and the sameness and how things intertwine. I am sure I would find it very helpful.



Hello Helen,

This entire website is full of stories of our lives. Please feel comfortable looking around and reading the discussions. You can also read our profiles, just click on our photo, or butterfly, and it will take you to our page. We all understand how you feel and how this affects your life.

Hope you are having a good night.



Hi Helen,

Welcome to this site! I think you'll find a lot of people here who can relate to what you post. It's the hallmark of fibro.

I'm sorry you've got this rotten disease and are in such pain.

What a catch-22 situation: live pain free on a medicine that you cannot stay on indefinitely or else reduce the dose or get of the meds and have the pain return... Horrible, horrible choice to have to face.

Yes, mornings and nights are the worst times. Sleep is difficult. The pain is oftentimes horrible.

It's great that religion can help you some with the pain. Some people do find that positive thinking helps some.

Yes, fibro sure seems to be progressive.

What can you expect with this disease? Welllllllllllll, I hate to be the one to say this buttttttttt....more of the same. Aching fatigue on some days. Dizziness, foggy-headed thinking. Lots of pain. People who don't understand because you "look" well. Medical tests that show nothing wrong with your joints. Blood and inflammation tests that are always normal (unless you've got something else going on.) Some days where you feel good and think you really aren't sick at all, until the bad days return.

So that's why we're here. To try and support one another in this awful disease because we KNOW.

Many hugs to you for suffering through this.

Sure. I've been trying to do less of that recently because I do too much of it.

My pain started with heel pain that got hideous. Was told it was plantar's facia/bone spurs. I couldn't walk anymore the pain was so bad. Finally got inserts made which have helped immensely.

Then I injured my SI joint while at a gym. THAT pain is insidious and NEVER leaves. It's my life long "best friend forever." Next my tailbone got into the act. When THAT hurts, I MUST listen. I can actually feel the pain radiating out from there, along with my life energy, I swear it!

Pain then slowly spread to the rest of the back. Mostly a dull, aching pain.

Pain then decided it liked my joints next. Elbows, hips, knees, shoulders, jaws, fingers. Feels like it's in my tendons in the elbows and knees. Dull and aching elsewhere, like arthritis.

Then the dizziness and fogginess set in. That's fun, when I'm working, delivering meals to the elderly, and suddenly feel like I'm spinning around due to the dizziness.

So that's my story, in short.