Progression of Symptoms?

[Paboo]

I guess what I am asking...Do the symptoms of Fibro/CFS/etc worsen through the years as does a cancer for example.  I had been told by my physician at the beginning which was about 6 years ago that they do not.  But my body is telling me something completely different!

[Ingebose]

To all of the above you have my full compassion and understanding. I was
diagnosed almost 4 years ago and I definitely feel the disease has progressed. I did not have swelling in my right leg, only my left one. I did
not experience Fibro-fog and many other typical symptoms of this most
wretched disease. Sometimes I feel like I have leveled off due to having
physical therapy twice and hydro-therapy 3 times a week but then I have a day like today when I can hardly walk at all. I take my medications on time, am under the care of a wonderful female physician and also am seen monthly at the pain-management department of the Ponta Delgada Hospital (I live in the Azores on Sao Miguel). When I was first diagnosed I did likewise not have any problems in my arms at all, so anybody who tells me it is NOT progressive, I can give a list to counter that notion. It IS progressive and very much so. I am on Tapentadol 100 mg but sometimes
I have to double-up and they always provide me with enough medication until I have my next monthly check-up which is very thorough. People tell me I don't look sick at all, as a matter of fact they think I look very healthy but they have no idea who deceptive  and cunning this illness is. The disease that hides inside your body but the pain is so severe sometimes that tears flow without my wanting to cry. The points at which the progressions took place are not  connected to any emotional stress or stress of any kind, this disease has it's own mind and while at times I think the weather can have an effect, most changes have taken place over the past few years without any particular cause. I am an author and in the middle of writing a new novel, my physician tells me 30 minutes on the PC and 30 minutes resting with elevated lower limbs. I can identify with all the above and as usual, the Mayo Clinic is right, they were in the forefront of realizing Fibromyalgia was a debilitating disease when other physicians were still scratching their heads and making the sufferers feel badly by telling them they were imagining the symptoms. Good luck to all, let's hang in there until they may find a cure. Hopefully in my lifetime!

[dee148931]

I was diagnosed in 97 after two years of being tested for everything under the sun (even a colonoscopy for diverticulitis), like I needed that!  I was even sent to an oncologist who, as is often the case, intimated I should consider a psychiatrist.  I told him I've seen the psychiatrist and he has seen me!  Don't even try to go there.  This pain is real.  We've eliminated blood, bone, and organs in all your tests.  I keep telling you it feels like muscle.  Send me to a Rheumatologist.  He did finally admit that that might be best.  Within 15 minutes we had a diagnosis of Fybromialgia and I had all 18 points.  I was told it was not progressive and put on pain meds, sleep meds, and muscle relaxers and told, "This is your life and you will not be able to pick up your grandchildren".  After 6 years I finally was able to go back to work after 6 years of total disability thanks to alternative medicines and a chiropractor who used to teach chiropractics and does pressure/trigger points and every joint in my body.  A year ago, I had emergency surgery for a tunneling ceptic cyst.  After that surgery, I did not "bounce" back like I thought I would.  Instead, I became more tired, I've had more flares, the symptoms have worsened, and my legs from the knees down now tingle with the pain and my feet are almost unbearable.  The achilles tendon in my left ankle is now a constant problem.  In 96 my plantar facia tendons in my feet went.  Then the knees started to develop problems, then hips, elbows, shoulder joints and wrists/hands.  This new developement of the tiredness, slow down, and achilles tendon have made me realize the disease is "progressing", and I believe the new trauma of the surgery is the catalyst.  And, according to the information I read in a Mayo Clinic study, it is progressive.

[Paboo]

I am having a great morning so far!  I too am learning that if I will pace myself I am much better off the following days after streneous housework or whatever!  I love cleaning my tiles like that too, hardwooods too.  But, just take it a day at a time, and in some cases, a month at a time!  I have enjoyed just being able to speak with someone who understands and who can know in their hearts that none of this is being made up!  You have a wonderful day!  I'm off to visit with my Grandson and daughter-in-law as well as see my doc about some sample meds!  
                 "Rest in the Lord, and wait patiently for Him."  Psalm 37:7

[LLWB]

Glad you're feeling better today. It can be so frustrating not being able to do anything. But don't over do! That is the biggest mistake. I have quite a few tile floors, and a few weeks ago just had to get down and clean them. Yes, on hands & knees. A mop just doesn't do it for me. But it took me three days to do them. Instead of suffering for several weeks with a flair, I was just fatigued for a few days. I'm 60, so I understand your concerns of being alone to deal with this illness. The last flair I had was from a cardiac nuculear stress test. Run on treadmill until you can't any more! I flaired up big time, until 3 months later when my doctor put me back on Lyrica. It really does help with the pain, I was about ready to shoiot myself! LOLIt took about a month, but am finally feeling somewhat better. Just upped the dose again this am. Still have some residual pain, but getting better. I wanted to do stuff this past weekend, but ended up taking a 2-3hr nap both days. As soon as I figure out this friends thingie, I'll reply to your e-mail!!.Maggie

[Paboo]

Hi Curls, I have had many changes in my routine lately that now I can look back on and can say "yes" that is probably why this or this is happening.  I fight sleep big time!  Just like a small child would!  I feel it is a waste of time!  (That is just in my mind....I know we MUST have rest!)  Fibromed, I do not take an anti-depressant.  I did.  I took Effexor...gained about 40+ pounds!  Looked hideous!  I have always been tiny, but with that drug, oh my goodness!  Since coming off of it, I have lost about 15+ pounds in the last 3 1/2 weeks; mainly fluid.  So, that is another big change for me lately.  

Curls, funny you mention a change in laundry detergent.  I didn't change that, but I did change deodarant!  MISTAKE!  Big time rash!  

All in all, today was good.  Worked with my daughter-in-law in her retail store for a few hours.  Felt productive!

[fibromed]

paboo
are you on antidepressants because when i tried paxil - 10mg - all i could do was sleep
couldnt help myself - ads are supposed to have the opposite bring you up not lay you down - just an idea
oh and suep44
dont even get me started on family - totally NOT there when i needed them the most
that is the family i grew up with
my real family has rolled with the punches and helped me out a lot
im hoping for a cure to - my old doc and was always helpful when i came up with my own ideas of cures
best go getting really cold

[Curls]

Paboo, for most people it's not progressive.  By far the most common is to improve and then plateue. (spelling?)  Maybe 12% to 2% get completely well (the research is all over the place).  Maybe 15-20% stay the same or get worse.  Often those who stay the same or get worse have other factors going on like depression from it or uncontrollable stress factors in their lives (such as ill parents) which make it harder to manage.

Maybe there's something you've changed in your routine or new stressors that are triggering this?  Even a new laundry detergent or food can do it if you're sensitive.  

As you scan down the forum, people have tried all sorts of things for cfs (the sleep is more common in cfs so you'll find more ideas for it on those sites and those comments).  Hopefully something will be helpful to you.

My doctor keeps telling me  (and other cfs experts concur) it's important to take what you need to control the pain whle you're sleeping.  Even if you aren't aware, it will reduce the quality of sleep stopping your body's normal processes and increasing pain levels, which then creates a cycle.  

Sometimes a new factor will develop later in the illness.  Then if you can figure it (such as dysautonomia triggering)...it can help.

(I should add for completeness to anyone reading.  Some progressive cases are undiagnosed Lyme disease.)

[Paboo]

          Thanks so much for your comments.  I was really depressed a few hours ago.  It was a hard fight yesterday!  I do feel better today, but just heard where we have an 80% chance of rain in our forecast.  So, you know the pain I will be in today!  It helps to have someone to "type" to who COMPLETELY understands what you are going through and can share with you the ways they have come up with to be able to overcome the pain.  
          I have always had a high tolerance for pain, but of late, my tolerance is either low, or the pain has heightened to a new level!  WOW!  But, now, not just the pain, it is the fatigue.  I actually fall asleep at the drop of the hat!  I can be DRIVING, standing at the kitchen sink washing dishes, working here at the computer!  It doesn't matter!  I ACTUALLY GO TO SLEEP!  I am afraid to drive now and I am only 50.  I really do not know what to do.  Do you do this too?  If so, do you take anything for it?

[suep44]

Hi Paboo,

                                                I was dx about 12 years ago, and I agree with what LLWB and Fibromed says. It does seem to get worse at times especially if you have other symptoms which are progressive. My bladder problems and low backpain are much worse, infact I didnt even have them when I was first dx with FM.
I do think as we age we are going to get weaker and feel worse wether we are deteriating or not.
I was really pleased to see that both LLWB and Fibromed had wrote something that I had only thought of, but never been brave enough to say to my doctor or family.
Fibro might not kill us, but at times we wish it did as there is no ending to this pain. Im so glad that others feel the same and its not just me being depressed or something.
I just hope that a cure is found one day.
sue x

[fibromed]

thats the first thing the doctor who dx me said "well you have fibromyalgia - the good part is that you cant die from it" no but i wish i would
our drs (the good ones) try to keep hope on the horizon whilst still understanding or trying to understand our pain
i think part of it is learning to pace takes a long time - in some ways i felt worse in the first couple of years than i do now just because it was new and scary - now i know what pains stay and which ones will go away and what things cause certain pains and when to stop doing those things  
to answer the question:
and this is straight from the good docs mouth you do worsen until you level off - i leveled off at disabled - i have other things wrong as well - ive always compared it to cancer as in some get it really bad or aggressive cancer and some get treatable cancer
i got the really bad fibro and some get the treatable kind - you know no pain meds and pain clinics will help them - they wont take you at the pain clinic unless you dont take any meds - that seems right eh?! wrong
any way i leveled off about 6-7 yrs in - i dont know if thats the same with everyone - plus dealing with this for years takes a toll on the body and the mind - time to regroup maybe - refresh - i dont know if this makes sense or not
drs used to tell me you will get better - me at 32 - i always thought they were thinking of older people (you know the nerves start dying and wont feel as much pain) because its only recently that they are acknowledging it starting in women and men younger than 50 and 60 yr olds
hope this helps
take care

[LLWB]

We have all been told the same thing. It is not a deteriorating condition like cancer or ms. I think what we do is suffer chronic pain for so long, and the other symptoms that we gradually do less and less, especially as we get older. Other things go wrong with our bodies, and the fibro flares can increase in intensity. It's hard to imagine you aren't actually physically getting worse. But nodody has ever died from fibro........just wish they had.Good luck