Post tx issues.... again

[Diane12855]

I'm getting a little tired of this mess!!!! I figured out how to deal with the restless leg issue, thanks for the input ya'll.

I've been having spinal pains since during tx so I figured that it would be a while till it went away. I'm going on 2 months since I stopped, and actually the pain in the mornings is gone, thank God, then it was every afternoon at around 2... and that has cut back too. Now that I'm feeling better and my hgb is back in the normal range, I am actually feeling like DOING things... but it never fails, I do something simple like brushing my dog, or ironing some clothes and I wind up in Extreme pain, that starts in my neck, then spreads up to my head, down my back, across my shoulders to my arms, and it even makes me nauseous. All the pain meds I have don't touch it for 2 hours. I can't figure out if it is joint, muscle or nerve pain. Did anybody else have this when they finished tx? If so.... did it go away after a while?

I know, I know... I'm sounding paranoid... Maybe I'm impatient about getting over this mess... or maybe I'm afraid about what I will wind up dealing with for the rest of my life, but if I can't ask you guys, who have been with me through all of this, who can I ask? Doctors don't have a clue, that's for sure.

Diane

[James10500]

I hear you.  When I sleep on my stomach and wake  when I turn over there is an insane pain in my lower back.  I've never had that pain before, and not while on treatment.
Remember minimum recovery time is six months.  It's a bummer no doubt good luck.

[Diane12855]

Thanks for the referral to the old thread. I wasn't on here much the last couple months of tx, or the first month off of it, so I missed that one.

Diane

[DoubleDose]

You are correct, doctors do not have a clue about these post-tx issues.  Mine included your symptoms, and began about two weeks after finishing my last tx, and have persisted in one form or another for almost eight years.  I am SVR, but still have a host of after-effects that are often very troublesome.  The spinal, joint, and muscle issues are very difficult to deal with.  BTW, I have had just about every test and scan known to man.  No true Autoimmune, nothing of great note on Cat Scans, X-Rays, MRI's, Blood work of every kind...etc.  My mild Hypothyroid from tx has been fully corrected with synthroid since right after tx, and is in the optimal range.  I have not found a doctor yet that has a clue how to treat any of this.  My Rheumatologist says he has a large contingent of post-tx patients who have come to him over the past five or more years, complaining of all the same issues.  He says it is a common complaint from those who have done interferon therapy.  I just wish they had some solutions!  They don't really even understand exactly why interferon seems to often cause these problems, they just know that it does happen.  I try to eat well, exercise a lot, and reduce stress.  Often even those things don't help either...but over the long haul, I do believe it will be at least helpful.  Good Luck to you.
Also, you might look through old threads for the "Long Term After Effects from TX thread that was started a month or so back.  

DoubleDose

[paen53]

I think it might be wise to rule out anything of a degenerative nature, RA, etc to be on the safe side. Otherwise I found exercise to be very helpful, albeit painful to start, plus good for the emotional aspects of post tx.

If you decide to try massage, ask for a relaxing massage to start and explain your issues so it's not too intense at least to start. And drink lots of water afterwards to flush the toxins. Hang in there......

[willbb]

Diane..the rule of thumb for muscles and joints is... if it hurts don"t do it...gentle stretching is good .but not to the point of pain,hope you are also staying well hydrated  and  as Pam has suggested...patience :)

Best...Will

[Diane12855]

Thanks for your input.

I guess I should be more realistic and not look for all of the issues to be gone till a year post tx.

My husband and I have a disagreement about how I should deal with this pain thing. He thinks I shouldn't do anything that may make it flare up, but I think that stretching and moving may make it hurt now, but if I keep it up things will eventually get better... hopefully sooner rather than later.

What do you think?

Diane

BTW I haven't gone to a massage therapist, but I do have a heated neck massager that I use when it gets bad. Doesn't seem to help much. Could be I should use it when I first notice the pain starting instead of waiting till nothing else seems to be working, like I have been doing.

[paen53]

I experienced some of the issues you and the others have had. Mine didn't start until about three months post and continued (and worsened) until about March of this year. Many of the steps (thyroid check, Vit. D, diet) meakea and Gee have taken also worked for me too. I really had to push myself to exercise through the pain, but it was essential in staying mobile. I empathize with you cuz it's really concerning wondering if this is a lifetime condition we have to deal with.

I can now say that, one week short of one year post EOT that I am finally coming into my own. Going down stairs can still be a challenge and I have flare ups of what think is plantar fasciitis that sometimes hobbles me in the mornings. I recently started swmming and cycling which seems to have lessened the latter. On the worst days, I take an occasional Alleve which seems to work better than Tylenol (which my Dr. has ok'd with my cirrhosis).

Here's hoping that yours is short lived. It can be so frustrating when part of you feels SO good and wants to be active, and the rest of you says, no way!

BTW, my pain seems to be more muscular in nature. My massage therapist says my legs and back/shoulders/necks are extremely tight some days, LOL and I can vouch for that. Have you tried massage? I'm down to once every other week now, but will stay there for the time being. Just a thought....

Good luck, Pam

[Gee704]

Hi Diane!

I certainly sympathize with you as I too am having post issues at 15 weeks post. I am sore all over my body. I have started walking and although I can finish a mile I am pretty winded after. I did develop a hypothyroid issue from treatment which can make for muscle weakness. If I don't get past this soon I will have my TSH tested again to see if the medication needs adjusting.

I hope things get better for you.

[meakea]

Diane, I did not have the type of pain you are describing, but my post treatment experience had it's ups and downs for quite some time.  As you have experienced, it can be one thing then another...but...each of those things (for me) has done it's time and then moved on.  I did have pain in my joints post treatment that moved from one to another.  First it was my feet - it was extremely difficult to walk first thing in the morning and then it was a constant feeling of a very bad, painful kink in my neck that lasted longer than I care to remember.  

As hard as it is, try not to get discouraged.  I have a feeling your new (but very painful) issue will pass too.  If not, you know the drill...call the doc and get any blood work that hasn't already been done (Vit D level, blood glucose, etc).  

Maybe it's my imagination, but I have found that a lower carb diet greatly eased my aches/pains...and I upped my Vit D too.

I wish you the best!