Shortness of breath / fatigue

[SJL]

Just wondering if anyone else is still experiencing fatigue and shortness of breath post therapy?
After over 100 combined weeks of therapy, ending in August 06, I find that I am still tired and when I try to do anything, as simple as going to the grocery,fix dinner, etc.,I perspire like crazy and become short of breath. I have done the rounds of Doctors in Orlando and now I am going to Shands Teaching Hospital. I have seen at Shands an Arthritis/Immunologist, an Orthopedic Specialist and I now have an appt. with a Neurologist.

I have been left with a myriad of side affects from the interferons, the worse probably being Neuropathy in my legs and feet, causing 15 falls. (I have just fallen again)Instantly, without warning, they just go numb. I have seen Cardiologists, Orthos, NeuroSurgeons, Neurologists. I beleive I am up to about 16 different Doctors I have seen now, besides my Hepatologist.

They are leaning towards cervical myelopathy, which could be handled through Decompression Surgery, but no-one can tell me if this will affect my legs. I do have several disc bulges and bone spurs.

Thanks for listening and I am anxious to see if anyone else has this problem-or am I completely interferon crazy!!!!

Sandy

[rosebud57]

neuro pain i began experiencing before tx. began about 2000, i was in school, well have been forever it seems... thought it could be carpel tunnel at first. never really found out what caused it back then.. RA dr. prescribed neurontin, took low doses as needed. for almost 3 yrs. only used the meds when needed so didn't use much.  helped a lot with the "flareups" i would get that would last about 6 weeks,  never did figure out what it was...

gone for years since about 2004 or 05  chiropractic is my only explanation.  fixed both upper back and lower back problems which caused numbness in feet, and hands. took me more than one chiropractor to find the one who could work with me.  i am not large but carry a lot of tension makes it hard to adjust neck region... i always have needed chiro who knows their stuff.

[Pdilly]

I should have made myself more clear.  I had symptoms about 2 years before tx.  It took them about a year to get to the bottom of it.  I just thought I'd let you know that carrying things whether it be a purse or anything heavy can cause you to put your hips in a non normal position.  Usually you don't even notice.   My doctor pointed it out to me.   I went with some of those little purses that had a checkbook, coin purse  etc all in one.  It really made a difference.  I am still carrying smaller purses..  Now I wonder what I needed to lug all that stuff around for anyway all those years.  10 lipsticks ... really.  Now I pull one out when we go somewhere and a small perfume.   I no longer wear high heals.  That was a change put I welcome it big time. In face 3 weeks ago I put on a pair of heal for maybe 5 minutes and changed to flats.  My toes love the freedom.  Who invented heels anyway?.

[SJL]

Susan-I know exactly what you are saying. I don't know what's what anymore and the sad part is that my memory (mostly, short-term) is getting worse. I guess we just have to work real hard and try to deal with it, but it's very discouraging after all this time.

Rosebud57-When  did you experience the neuro pain? During therapy or after?

Pdilly-What stage were you at when you experienced the neuropathy? The light purse idea is excellent, thanks so much.
I would probably never have thought of that!

Wyntre9- Wishing you good luck on your therapy. It sounds like you are doing well! It's funny how the meds affect everyone differently. God bless you.

Also- how about the profuse perspiration problem and lack of energy (alias) couch potato.

Sandy

[Pdilly]

I too was falling or walking and then dropping for no reason.  They had me tested for MS as that is typical of that.  They kept at it until they found a pinched nerve in my lower back.  They gave me some epidurals till the bulging discs went back in place then I quit falling.  Had to carry a very light purse and no more of those stelettos (darn it anyway ,   ha).   This just may be another angle for you.  I too am sorry you are having so many issues.

[wyntre9]

I'm at 14 weeks TX so I can't say anything about post TX problems.

It sounds really scary to be falling so often.

Just wanted to let you know I hope you find some relief.


Wyntre

[susan400]

Sandy,

I'm so sorry that you're suffering so much.  I have my post treatment struggles, but nothing like what you're going through!  I'm a gluten for punishment though, because I'm still keeping the option of a study in the back of what's left in my brain.  Anyway, I don't know at this point, what's the Hep C, what's the post treatment and what's totally unrelated to either one of the first 2.  I know that part of it, could be hormonal.  I know that part of it could be thyroid, I'll be seeing the internal med doctor and find out my level on that in mid-April.  I don't know if part of it could be that stubborn low sodium (which I have tried to cut back on my drinking of beverages).  It's just hard to know.  I don't know if part of it could be one of the meds I take for other things.  

I guess we'll be meeting soon.

Susan

[rosebud57]

this might be totally unrelated, but before tx i had neuropathic pain, was dx with fibromyalgia, i personally didn't buy into it, but know it does exist. it took many doctors, massage therapy and chiropractic but it was mostly chiro that put me right again.  when i began tx i did not experience neuropathy anymore, lately while on tx. 17 & 18 week of 24. I have experienced neuropathy again. don't know if it is medication or my back is out.  having a lot of trouble with back as i lay down a lot more now. trying to exercise but not much energy. had to see chiro 3 x last week.  yoga helps.  i responded to thread above. i would also look at your thyroid even low range normal can give lethargic always tired, depressed when normally you may not be depressed person. skin changes, dryness, like silly putty almost. can pinch cheek and release, skin will stay scrunched in abnormal way.   of course a lot of other things going on different in each of us.  age, general heath, etc... so just my experience.

good luck, and hope you find a solution and feel better soon.
rose