Dialysis and Body Pain

[whydotheheathenrage]

Hey guys!  I signed up and introduced myself here a few months ago, but never posted again because things get really crazy.  Quick overview, I'm not the patient.  The patient is my mom.  She's 62 years old, been in kidney failure since around 1993.  Went on dialysis in 1996, got a transplant in 2000 which lasted until May 2011.  In addition to kidney failure, she has COPD, osteoporosis, type 2 diabetes, atrial fibrulation and survived a heart bypass in 2008 and a bypass in her abdomen in 2005 for PVD.  That's a lot of background I know!

My mom is having a hard time adjusting to being on dialysis again.  For one thing, there just seems to be a lot of complications.  She's had extremely painful infiltrated veins on multiple occasions, so bad that they've had to put in a temporary heart cath to do dialysis.  She's bled out severely on two occasions requiring blood transfusions on both occasions.  I don't know if these are normal complications of dialysis or if they are unique to the patient or to the dialysis center.  My mom usually blames herself for bleeding out because she moved when she shouldn't have.  The infiltrated veins have to be "operator error."

More than the complications at dialysis itself, she's suffering from extreme pain in her bones day and night.  Her doctor tried to treat her for diabetic neuropathy, but she thought it didn't help and that the neurontin was causing weight gain.  Mom has often suffered from muscle pain because she has on occasion been basically been immobile due to medical issues.  However, at the moment she is relatively mobile and she believes that the extreme pain she is feeling in her body really began when she started dialysis again in May 2012.  The pain is severe enough that she has considered going off dialysis simply because she doesn't feel life is living if she's in pain all of the time.  This has been particularly true since my father passed away unexpectedly Jan 19th.

The pain is particularly strong in her legs.  She describes it as an ache and that she feels like she has the flu all of the time.  She has a lack of energy as well, although I think her age and general medical condition can account for that part.  Mom has a number of medical issues, but she hates talking to doctors.  If a medication doesn't work, she goes off it and doesn't "bother her doctor" with the problem again.  So the doctor doesn't know the issue continues.

Just trying to get a feel for whether or not this is a dialysis complication that's common or not.  She has multiple issues, so it could be related to any of them.  However, if I had even anecdotal evidence it might convince her to talk to a doctor or try something new to control her pain.

Thank you in advance and sorry for the long post!

[Traveller1947]

Hi, Sarah--glad you're back!  Please accept my condolences on the death of your father.  It must have been a shock to both you and your mother.  As her caretaker, you'll find lots of help and support here.  I know what it is to have such extreme leg pain that it robs you of all sleep and sensible thinking.  Sitting immobile in that dialysis chair for four hours three times a week was pure torture.  I eventually found a neurologist who had experience with pain management, and after the appropriate tests, helped me with a combination of gabapentin (Lyrica) and oxycodone.  The diagnosis was spinal stenosis, but like your mother, I have multiple health problems, so I didn't (and don't) expect miracles.  How common this is in dialysis patients, I don't really know, but it's the immobility that contributes to the pain.  Your Mom is so lucky to have you as her advocate--find strength and information here as you need it.  All the best to you both.

[Annig83]

Hi Sarah- I'm so sorry for your loss, it must be very difficult in becoming your Mom's caregiver at such a turning point in your lives.  I personally do not have leg pain, but I am doing CCPD instead of Hemo.  When I first read your post I thought for sure that it could be the Osteoporosis causing your mother's pain, but you stated that it has been worse since she started D again.  (My grandmother had Osteo. very bad, and it was mostly her hips and spine that bothered her most anyway).  However, I agree with Traveller that it's very possible she's hurting from the inmobility during Hemo, since fluids shift and sometimes don't leave the legs.   I found a webiste for you and hopefully it may answer some of her/your questions.
http://www.kidney-friends.net/showthread.php?tid=5103

[MaryD]

Is your mother on a statin?  I had a lot of muscle pain which hung about and made life a drag.  I had trouble dressing myself and getting in and out of the car took SOOO long and was SOOO uncomfortable.  When I mentioned this to my pharmacist (after having complained to various doctors I was seeing), she looked me in the eye and asked if I was on a statin and if so said I should go and see my doctor - sooner rather than later - stated very firmly.  I went off Lipitor (instant relief from the pain) and started on Crestor.  That was also a bit of a disaster but the pain didn't return.

I hope things can ease for you mother soon