Topic: Experiences with back/limb pain

Hi everyone -

Since I've been reading the forum, I remember some experiences where people have had pain (mostly due to mets) in the back and occassionally arms or legs.

My dad has developed a very inconsistent pain in the shoulders and last night mom told me it was pretty bad and he had a terrible night's sleep. Apparently it was managed relatively quickly with over the counter analgesics and a bit of massage.

I really don't know what to think because the pain is not consistent and it can be managed relatively well but it has popped out of nowhere really.

I ask myself if this might be a symptom of mets or (hopefully) just a postural problem largely because he sits around so much and is very weak & thin.

If anybody has any insight into how to interpret this type of pain and can also share some of your experiences with bone issues it would be great.

Thank you so much and best of luck to everyone.

Amilcar

Re: Experiences with back/limb pain

funny you should ask as I too had been having some back pain, I thought it was the way I was sitting.  But, according to my CT scan it's mets to the spine.  the only real way you are going to know what the pain is being caused by is through some kind of scan so they can look at the site of the pain.  good luck honey!

Re: Experiences with back/limb pain

sorry to hear that - certainly not the news one wants to hear.

one question on your pain, has it been pretty consistent or intermittent? Also, did you sense any sense of progression or was it relatively consistent.

Dad definetely needs to get a new scan.

thanks for the insight!

best of luck!

Amilcar

Re: Experiences with back/limb pain

it's pretty consistent but also relieved somewhat when I change position, also relieved when I take my pain med.  I haven't had it long enough to really judge on whether there is progression, it's just there.

thanks for the good wishes, this site is a godsend!

Re: Experiences with back/limb pain

Amilcar
I'm glad someone else is asking about back pain. John has been having severe pain in his middle to lower back. Also pain and pressure in the liver area. He's been taking 2 oxycodone every 4 hours. Unfortunatly the pain meds caused constipation which caused even worse pain. After a miserable couple of days we got back on track. The Dr. prescribed extended release oxycodone, seems to be doing the trick. But, John will sleep for 16 or more hours at a time and is weak and stumbles when he walks. Should I let him sleep or should I try to get him up and on the go. I want to do what's best for him but I'm not sure. The Dr. just shakes his head when we tell him about the pain. I wish they would give us some idea whats causing the different pains. I just don't think they are telling us everything. Its frustrating.
I hope by compairing notes maybe we can help each other


Alice

Re: Experiences with back/limb pain

Hi Amilcar

This may help to settle your mind a bit.  I saw my oncologist on Tuesday and it was decided that I would receive palliative chemo when I start to get symptoms.  Things to look out for were jaundice, loss of weight and appetite and unusual pains.  He said the pain part was the most difficult to recognise since it is important to differentiate from all the normal pains and feelings of discomfort that we all have.  I get aches in my back and my shoulder but I have usually spent a long time at the computer.  I get pains in my abdomen, in fact I had one on Tuesday but I had spent a couple of hours in the garden on Monday (first gardening for 3 months).  Also, I get lots of wind and this can cause discomfort.  It is quite understandable to always suspect the worst but it is just as likely to be something quite mundane.

Ron

Re: Experiences with back/limb pain

I wanted to second what Ron wrote. My mom was received Gemcitabine/Cisplatin for about 6 weeks and experienced continuous pain in her side and rib area during treatment and for months after. We were told that there is always a possibility that the shots they give you to boost your bone marrow can create bone spurts; thus, pain appears suddenly.

When that logic didn't apply to her pain any longer, we felt convinced it was mets to her bones. Lo and behold, a bone scan showed some small fractures in her ribs (she has osteoporosis) that were NOT caused by mets. And she also experienced back pain that eventually subsided.

I hope some of this can ease your mind until you know for sure.

Abigail

Re: Experiences with back/limb pain

Hi everyone - thanks for sharing you experiences, it's always valuable to hear from other and understand the complex routes this disease can take.

The last episode of arm pain has apparently subsided and dad seems to be doing much better. With my dad it's always very hard to judge pain, particularly in the back and limbs because he's always had a really bad back and his threshold for pain is not great.

As happy as we are that now the pain has gone away he is super tired (i think the pain really fatigued him in combo with the multiple pain relievers and sleep meds he took to rest). Having a low red blood count does not help either.

My dad's disease progression is rather atypical and that's why it has been really hard to evaluate problems. He has not really had any of the traditional symptoms (outside of the initial jaundice many months ago) but he has had two severe infections and he has his lung mets. We also think the latest chemo regimen he used really gave him a beating so hopefully now that it has changed he can recover a bit.

As frustrating and tiring as it is we just need to continue the fight and be grateful he has had an overall reasonably comfortable experience so far.

Anyway, thanks for sharing and I wish you all the best of luck.

Take care,

Amilcar

Re: Experiences with back/limb pain

Wanted to share that my dad started experiencing sharp shoulder pain too.  The docot prescribed the extended realease oxy today.

If Alice is reading this - please share more.  I am afraid my dad is getting much worse and nobody can tell us anything about the progression of the disease.

Re: Experiences with back/limb pain

Dave has shoulder pain too.  I told him that as a nurse, I think it is probably from the enlarged size of his liver and spleen but he continues to say it is muscle pain from "sleeping wrong".  So, I don't argue as pain is pain for whatever reason.  Dave takes pain med(oxycodone) every 4-6 hours but really can't pin-point pain-just complains of generalized pain.  Talk about atypical....he has never had abdominal pain, jaundice, has normal markers and we wouldn't have even known he was sick except that he had hypercalcemia (which is unusual with CC) and a 35 lb.weight loss and then the CT scan showed multiple very large liver tumors.  This disease is just mind-boggling. Patrice