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On the Progressiveness of Fibro

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Posted 10/2/2014 12:31 PM (GMT 0)
Hi All,

Been here awhile mostly lurking, but I have some questions I'd like to ask.

I've read on here many times that "Fibro is not progressive" so don't worry about things getting worse and worse. Well, I beg to differ on that topic. Below is my story.

1) Have had "fibro like" symptoms for about two years now. It started with fatigue and constant back pain and has "progressed" now into my ankles, knees, elbows, and hips, etc.
2) PCP "diagnosed" fibro about a year ago, but he's not really sure because I have no "trigger points..."
3) Lyrica worked so well for six weeks that I thought it was a wonder drug and that I was cured.
4) Lyrica no longer seems to do anything, but I'm trying various doses to see if this is so. (Yeah, I know there is withdrawal periods so that must influence my analysis)
5) Tramadol and Codeine are the only things that get me through the day now.
6) A recent new symptom is extreme nausea and extreme "flu-like" overall pain that wakes me up in the middle of the night.
7) Also, recently, my eyes burn and my face feels like it is sunburned, but this is mostly in the evening.

Anyway, my symptoms continue to worsen, so much so I'm having trouble typing this message as the joints in my fingers hurt and barely work. Also, the "tightness" in all my joints now affect the way I walk and I can no longer run even close to normal.

So, my question is about others having a "progressiveness" experience with Fibro or should I be looking for another cause of all my issues. I will see a Rhume in about 10 days as the PCP is unsure of the fibro diagnosis now. ANA marker has been checked over and over and is not there.

Thanks!

Tom

Post Edited (TomBSCS) : 10/2/2014 6:42:40 AM (GMT-6)

Posted 10/2/2014 3:14 PM (GMT 0)
Tom,

I do not like that flu like stomach thing in the middle of the night. This does not sound like fibro to me, so i am glad you will be seeing another dr and getting further diagnosis...

Just sounds to me like if you have fibro, you also have something else going on.

Earlier in the year i thought my fibro was getting much worse, but it was actually my vit d crashed...so it can be things on top of the fibro...hope your rhuemy can get to the bottom of this for you.

Lj
Posted 10/2/2014 8:16 PM (GMT 0)
The burning skin thing makes me concern. That sounds like UV light issues.

I hope the rheumy can tell you answers.
Posted 10/2/2014 8:37 PM (GMT 0)
I would suspect another illness, maybe instead of, or in addition to, Fibro. Hopefully, your rheumatologist can help you further.

Fibro is an illness that waxes and wanes sometimes for no apparent reason.

When I feel worse, it is usually because of something I am doing, or not doing, or because another condition is bad.
Posted 10/3/2014 2:29 AM (GMT 0)
Thanks all for the replies. Maybe I really do have "flares" and this is just a difficult period. We'll know next week as I'll either feel better or worse. :-)

One other thing. I thought the "sunburn" feeling on various areas of the skin was a common symptom of fibro?

Post Edited (TomBSCS) : 10/2/2014 8:32:31 PM (GMT-6)

Posted 10/3/2014 3:34 AM (GMT 0)
Tom

I used to get sensitive scalp and very tender to touch. Haven't had that symptom in a while though. But I've never had nauseasness as a symptom.

I've been drinking my JC TONIC it's a vitamin herbal health tonic to help restore balance. It completely knocked out my fatigue symptoms. My Pcp told me probably because of the magnesium ingredient in it.

I haven't had a flare in over a month now, but do get aches and soreness every other day it seems. It's good your setting a doctor to find the cause of it.

Hope you start feeling better soon. Keep in touch.

-Fifth
Posted 10/3/2014 8:23 PM (GMT 0)
Hi, Tom, and welcome! I'm sorry I'm so late in responding but I have out of town guests and can't find time to get on the forum.

I did want to respond because I'm one who says it is not a progressive illness. I use good sources, this one being from the National Institutes of Health, and here is a link that says it. It's towards the bottom of the article but the whole article is very good.

http://www.niams.nih.gov/Health_Info/Fibromyalgia/

I think you also could have something else, along with fibro, going on. This happened to me when I was getting progressively worse. I headed to a board certified rheumatologist and discovered I also have ankylosing spondylitis which is like rheumatoid arthritis of the spine. I was put on proper medication and I'm doing really great now. So do get checked out, okay? We are not doctors and are guessing just like you are.

Be sure to read Fibro 101..the first thread on the forum. There are links to good info about fibro and you will learn a lot there also.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
Posted 10/4/2014 2:16 AM (GMT 0)
Hi Tom,
When I was first diagnosed over 14 years ago, I went to see Mark Pellegrino In Canton Ohio. He is a specialist in this condition and has it himself. When I asked the question you are asking to him, this was his response


I LIKE TO USE THE 1/3 RULE. 1/3 OF MY PATIENTS GET BETTER 1/3 STAY THE SAME AND 1/3 SEEM TO GET WORSE. IN THE 1/3 THAT SEEM TO GET WORSE, IT IS BECAUSE OTHER CONDITIONS HAVE DEVELOPED THAT INCREASED THE PAIN AND DISCOMFORT OF THE FIBROMYALGIA.

So,.....Yes definitely have everything possible ruled out. I had good control of my fibro for several years, then went through a stressful time in early 2013 and it has been out of whack every since. pain in new places such as elbows with sore spots when touched , strange red hot flushing of ears when they are touched. Other symptoms that I have not had in years have returned. So......since I have new symptoms have I gotten worse? I choose to think no. I believe that Fibro does wax and wane. Meaning periods {days, weeks, months.....years?} of feeling new and different symptoms that at any given time can change. who knows....maybe next year at this time the elbow ear thing will be gone and I will go back to the way I was for several years or maybe the pain will move into another part and stay there. I personally believe Tom that this condition is just tricky and sneaky. You never know what or where or how long something will last with it. THIS IS WHAT KEEPS THE FRUSTRATION ANXIETY FEAR AND DEPRESSION that so many feel with this condition going.

I believe that you mentally have to reach a point where you can say. No matter what new symptom I get, I can handle it. I know what it is and it will not hurt me. It is just fibro, I will do the best I can and ride the wave and find ways to come out on top. I am not saying by any means to ignore new symptoms, if they last for a period of time get them checked out. I think sometimes so many of us blame things on our fibro when in fact it is something else going on.

Ok...I will shut up now. LOL Do let us know how you are doing and hang in there my friend. You are stronger than you know.

Take care,
Michael
Posted 10/4/2014 3:00 AM (GMT 0)
Thank you all again for the detailed responses. Michael, I think you're right and your points make me feel a bit better. The last two-three weeks I've been working 60-70 hour weeks, some of which required significant (non-normal) physical exertion (with only 5 hours sleep) for a couple of days each week. It seems the fibro may be expressing itself a bit stronger (than ever) given these circumstances.

Sherrine, thanks for the .gov links and I'll read through there to research this "non-progressiveness" of fibro. I'm 51 and I've felt these various fibro symptoms since high school, it's just now that it is becoming debilitating and really affecting my life.
Posted 10/4/2014 4:39 AM (GMT 0)
Tom

You remind me of my father... Workaholic till just couldn't any longer.. He retired at early 62... minimal sleep... It will catch up with ya... He's on dialysis now and functioning better than I thought... He s a stubborn proud man... That should keep him around a few more years...
He worked hard physically for others and to make living... Lower end middle class... He probably doesn't realize it but he complains physical pain symptoms alot like ours... he just believes it old age says that's just the way it is.

My fibro is just now starting to interfere with my health that it made me go see doctors for it but not the ER... I wonder if mine will worsen... Just the other day I started to feel minor pain in my feet and knees.... A new place to hurt as time goes on..

Fifth
Posted 10/4/2014 4:48 AM (GMT 0)
Tom

Have you or anyone else had this symptom??

I would flush red... my skin... from my waist up to my face... Tomato red... I would feel heat... Burning... Like an allergic reaction... That went on for 2 years... I would take benadryl for it... But I could never figure out the trigger... Mother thought it was the washing with bleach... But i stopped that and it would continue anyway.. It hasn't happened after being 45....

Was that fibro related? I'll never know

Fifth
Posted 10/4/2014 6:29 PM (GMT 0)
Hi Tom, I have had a sunburn feeling for about 7 months now. I've only had a break from it when I was on gabapentin for 5 weeks. It randomly moves all over, big patches here and there, sometimes mild, sometimes a stinging burning feeling. Look up paresthesia and see if that sounds familiar at all.
Posted 10/4/2014 8:40 PM (GMT 0)
Hi Tom.

I believe what is meant by progressive in the case of a disease (R.A. for instance) is that the damage caused by the disease gets progressively worse and never improves. In the case of Fibromyalgia, and this has been my experience, the symptoms can definitely dis-improve, additional sites of pain can appear, but the symptoms can also improve and sometimes disappear. Crucially no damage is happening to any part of the body hence Fibromyalgia is not considered progressive.

I agree that it doesn't feel that way though smhair

I have experienced burning to the level of intense pain in my feet which was alleviated by Lyrica. No redness though.

Hope the doctor appointment goes well for you. Good luck, Neenaa.
Posted 10/5/2014 5:04 PM (GMT 0)
Hi Tom,

Stress will definitely cause Fibro to "flare" and feel worse. I had been doing great the last couple of years but I've found as I've been back in school that the additional stress of school and schedule have increased my symptoms. Instead of no bad days for months at a time, I'm finding I hit the wall about every two weeks now, but it's still just one day at a time usually.

That said, has your doctor run full panels on you to check you for other possible causes of your symptoms? I will say that I have all the symptoms you listed (including the face on fire, and flu-like pains) at different times, and some points much worse for longer than others. But, it's still important to make sure everything has been ruled out. If he suspects Fibro, then I'd at least ask him to refer you to a Rheumatologist as they will be more versed in treating it (and also know better what else to rule out).
Posted 10/7/2014 9:19 PM (GMT 0)
How about fever and malaise ?I get that during a flare up too along with pains and face on fire...

stress causes most of symptoms and aggravate the brain fog.
Posted 10/7/2014 9:32 PM (GMT 0)
Hi cilly,

Fever is not one of my symptoms, is that pretty normal for fibro? I know there are different types of this same disease.

I know people with cfs have flu like symptoms, but not familiar with it as a fibro symptom.

Lj
Posted 10/12/2014 5:54 PM (GMT 0)
Hi Tom,
I've wondered about the whole "Fibro is not progressive," too. My pain started with a car wreck over four years ago and it was assumed my pain was from spinal arthritis. Then eventually it did spread to my hips, legs, feet, toes, face. I also developed chronic fatigue. So, all the symptoms didn't appear at once. I'm thinking that at some point it levels off and you reach a point where it doesn't necessarily improve but it doesn't affect other areas of your body. The pain doctor I saw said that two years ago the trigger point part of diagnosing fibro ended and that doctors began to focus on the symptoms as a whole.
I don't have nausea, but most days I do feel like I have the flu because of the body aches. My eyes burn as well, but they always do when I'm running a fever (I tend to run low-grade fever with the fibro). I hope you find some relief. This isn't an easy condition to deal with by any means and I'm still trying to find my way. Just try to take it a day at a time and be good to yourself!
Posted 10/14/2014 11:22 AM (GMT 0)
I don't think it is necessary progressive for everybody. (Knock wood), my symptoms have lessened in the last few years. When I first got fibromyalgia, I was so sick and weak that I could barely walk and spent two years in bed. Now I don't do that. My pain has lessened and so has the fatigue. I think it is due to moving around. Though I needed help to get started moving. I Hope that it stays this way. We never know how we are going to feel from one day to the next. So I can't say tomorrow will be good, but so far, today is...

Hugs, Karen...
Posted 10/14/2014 3:50 PM (GMT 0)
Amen Miss Karen. ....Amen.

Michael
Posted 10/14/2014 11:49 PM (GMT 0)
Hi Michael,

I hope you had a good day today...

Hugs, Karen...
Posted 11/2/2014 1:50 PM (GMT 0)
Tom how are you doing lately
Posted Today 6:48 AM (GMT 0)
hi tom, i'm a new member too...this is my 1st post...let me answer emphatically YES fibro is progressive. i look back 8 yrs ago when i was 1st dx'd & how "sick" i was & think "gosh i was so healthy compared to now". i could cook (not in a crock pot), i could do laundry & not be worn out for a week, i could go to an action movie & not have to wear sunglasses & cotton in my ears! as my symptoms have progressed & my health has decreased my meds have increased even though my dr had to prescribe them to me while i was kicking & screaming "NO". yes i have "good" days but that just means i'm able to vacuum or cook taco meat lol...something easy.

i've learned to cope & find ways to take my mind off my pain & i focus on what my life will be like when i'm healthy again so i'm not all doom & gloom...in fact my family calls me "polly positive" it's just kind of hard tonight. i just got dx'd w/shingles! shakehead

i hope i was helpful :-)
Posted Today 12:42 PM (GMT 0)
Hi, Divalovinlife, and welcome. According to the National Institutes of Health. Fibro is not a progressive illness. We wax and wane but don't continue to get worse and worse. I'm not doubting what you are saying but you might want to see a board certified rheumatologist for a check-up. I had to do that.

I've had fibro for 27 years and it was never progressive but three years ago I started getting worse and worse...mainly my back and legs. At first I was blaming fibro for the extra pain but then I remembered it isn't a progressive illness so I saw a board certified rheumatologist who treats fibro patients. After many tests and x-rays it was discovered that I also have ankylosing spondylitis and sacroiliitis along with fibromyalgia. I was given proper medication for that and now I'm doing well again.

It's so easy to blame fibro for our pain but there are other illnesses that have many of the same symptoms as fibro and you can get worse and worse with these...things like lupus and Lyme disease. You can have these along with fibro. So it might be a good idea to get checked out again and have some tests run.

In Fibro 101...the first thread on the forum...there is a link called What Else Could It Be? You will see the various illnesses that have many of the same symptoms as fibro. All of Fibro 101 is good so do check it out.

It would be great if you posted an introductory thread. Some members won't know you are here! Our members love to help one another and, as a bonus, we do care about each other, too, so I think you will like it here. I'm looking forward to getting to know you better. Hope to hear more from you soon.

Sherrine
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