[jennylynn0826]

Flu-like constant pain in joints, bones & muscles

by jennylynn0826 on Mon Jul 31, 2017 5:13 am

I was diagnosed in April 2015 at 45 years old, very active, working 2 jobs, and raising 2 grand­children, ages 1 and 3 at that time. My skull has the appearance of a "honeycomb" due to the large quantities of lytic lesions. I underwent a stem cell transplant in November 2015. Until now, I have only had a small amount of fatigue and arthritis.

Let me back up by saying my bone marrow biopsies have never been "high" and neither has my urine or serum levels, but I've never reached remission.

In May of this year, it was found on a follow-up bone survey that I had a l4/l5 stress fracture and about a month later found a stress fracture on the sacrum.

Now for my question: I have NOT changed anything in my daily routine, diet, or medication, but now I am having almost debilitating pain. Every joint, bone, even muscle in my body hurts. Narcotics help some, but I only take them at night to ease the pain, but then they keep me awake. I sleep very little at night and that's the only time I can as the grandchildren are now 3 and 5.

Is it possible for my myeloma to cause pain with very low numbers?

My local oncologist says that there is no way that I can have pain from myeloma because my numbers are to low, but my myeloma specialist said at our first meeting that there are many people that have lesions and low numbers just as there are patients that have high numbers and no lesions.

I need to know that my pain is real and justified. I come from a very strong hard working family and this is making me feel like the biggest "wuss" or "sissy" because I don't pull my wait around like I used to.

[Nancy Shamanna]

Re: Flu-like constant pain in joints, bones & muscles

by Nancy Shamanna on Mon Jul 31, 2017 9:19 am

Hello Jennylynn,

Welcome to the forum, but sorry that it is a painful problem that brings you here! It sounds like you are very busy, and i hope that you can find some solution to the symptoms. I am not a doctor, but I think that if you have many lytic lesions, then that could lead to stress fractures. That certainly hap­pened to me, with fractures, and skeletal survey x-rays show that I have many (stable) lesions. They have not progressed since the myeloma is under control.

So I am careful not to lift heavy items and try to avoid falls. I know how fast children grow too, and how they put on weight, since I have three dear grandchildren under the age of three. I try not to carry them too much!

I hope that you can find a solution to the pain, and no, I don't think anyone here would think you are imagining this.

[bhagya]

Re: Flu-like constant pain in joints, bones & muscles

by bhagya on Mon Jul 31, 2017 9:40 am

Are you taking zoledronic acid (Zometa)? My mother too has pain in her back and arms, although her myeloma isn't very bad, per her doctors. She has multiple lesions in her ribs, arms, sacrum, hips, etc. Had a pathological fracture in her right humerus after which she was diag­nosed. She used to work at a farm and cook for 25 people in a day till she broke her arm. She had low back pain for nearly 6 years but never worried about it much. So it does happen and you are not imagining things. My mother is on the CyBorD (cyclo­phos­phamide, bortezomib, and dexamethasone) regimen, 3 in a month, with Zometa once a month.

[kshornb]

Re: Flu-like constant pain in joints, bones & muscles

by kshornb on Mon Jul 31, 2017 9:57 am

Hi Jennylynn:

Welcome to the forum, but so sorry you have to deal with this at your age.

I want to tell you are not a "wuss" or "sissy". I understand how you feel, because I felt the same way for months until I said "enough"!. I have been in remission for over a year now (had a stem cell transplant in May 2016), and have been in incredible pain since January of this year. The lesions alone can be painful (I have lesions on my skull, ribs, back and arms), not to mention your stress fractures can also be painful. All of my lesions are stable, but they are still there and take a looooooooong time to heal (according to my oncologist), and trust me they cause pain. I also have joint pain, burning, and numbness in my arms, which has now been diagnosed as fibro­myalgia, along with neuropathy.

You didn't mention what medications you are on. Just because you haven't changed them doesn't mean that they aren't now causing you pain. I had similar problems with Revlimid.

Do not let anyone make you feel bad about not feeling well. If you're not getting help from your oncologist, see a rheumatologist (fibromyalgia is not uncommon in cancer patients). Your body has been through a lot, and you shouldn't have to be in any pain. My rheumatologist put me on Cymbalta (duloxetine) for the fibromyalgia (which can also be helpful with neuropathy), and I continue to take pain meds daily. The pain has improved enough so that I can function during the day, and sleep at night.

Don't stop fighting for some relief. You deserve it.

Kathleen

[jennylynn0826]

Re: Flu-like constant pain in joints, bones & muscles

by jennylynn0826 on Mon Jul 31, 2017 5:14 pm

Thanks for the replies. I was on Revlimid after transplant for almost a year, but my numbers were creeping up, so they changed it to Ninlaro.

I also take Neurontin (gabapentin), nortriptyline, cyclobenzaprine (Flexeril), Lexapro (escitalo­pram), Singulair (monte­lukast), Claritin (loratadine) and Xanax (alprazolam) when I can't sleep. These along with the vitamins and blood pressure medications. I also have Lortab (loratadine) for when the pain is more than Tylenol (aceta­mino­phen / para­cetamol) or Motrin (Ibu­profen) can handle.

They've moved my Zometa treatments to every 3 months.

[goldmine848]

Re: Flu-like constant pain in joints, bones & muscles

by goldmine848 on Tue Aug 01, 2017 6:11 pm

Serious bone pain can be a rare but profound side effect from Zometa. If the pain occurs or worsens after your Zometa infusions, that may be the cause.