Pain Cycles?

Hello All,

I have MGUS and with it I have daily leg and hip pain that requires medication. I have been taking medication for about 7 or 8 months. My question concerns pain that is worse than normal. I have had two "episodes" of leg pain, same leg, that were far worse than the normal daily pain. Both times it was excruciating and the second time was worse than the first. I am blessed that they only last a few hours, the first was about 10 hours and the second about 4 hours. Does anyone else have cycles like this? It is frightening because I have no clue why they happened or if they will return.

I just had an MRI of my hips and legs last week and will find out next week if there are any lesions.

Thanks for your respones.

Be well,

Steve

On 6/29/2009 stevem57 wrote:

Hello All,

I have MGUS and with it I have daily leg and hip pain that requires medication. I have been taking medication for about 7 or 8 months. My question concerns pain that is worse than normal. I have had two "episodes" of leg pain, same leg, that were far worse than the normal daily pain. Both times it was excruciating and the second time was worse than the first. I am blessed that they only last a few hours, the first was about 10 hours and the second about 4 hours. Does anyone else have cycles like this? It is frightening because I have no clue why they happened or if they will return.

I just had an MRI of my hips and legs last week and will find out next week if there are any lesions.

Thanks for your respones.

Be well,

Steve

I'm with ya Steve! Unexplained and inconsistent leg pain and hip pain. I had a rheumatologist tell me last week...my pain made no medical sense..and that I probably had fibromyalgia.  Tears came to my eyes because I've always thought of fibromyalgia as the "hypocondriacs" disease.

Tomorrow I go to Moffitt to see an MGUS/MM expert - I am going to ask him about all of this come and go pain.  I'm also having my first BMB - yikes!!!!!!!!

Meanwhile...I'm entertaining the idea that maybe some of this has to do w/ diet.  I'm going to lay off gluten for a week or two and see what happens.  It's worth a shot!

Hugs,

Amy

 From Anna,

Hi Steve, Sounds like what they call break through
pain.  Dad has that.  He's on 2 different pain med's.  Sorry but I
don't know what he takes.  I think Perkiyset (sp?) is one of them.  
One he takes on a regular schedule and the other for break through
pain.   You need to talk to your Dr. about this would be my advice.

Your friend,

On 6/29/2009 stevem57 wrote:

Hello All,

I have MGUS and with it I have daily leg and hip pain that requires medication. I have been taking medication for about 7 or 8 months. My question concerns pain that is worse than normal. I have had two "episodes" of leg pain, same leg, that were far worse than the normal daily pain. Both times it was excruciating and the second time was worse than the first. I am blessed that they only last a few hours, the first was about 10 hours and the second about 4 hours. Does anyone else have cycles like this? It is frightening because I have no clue why they happened or if they will return.

I just had an MRI of my hips and legs last week and will find out next week if there are any lesions.

Thanks for your respones.

Be well,

Steve

On 6/29/2009 kittikatt wrote:

sounds   like breakthru pain as anna mentioned.  I also take percocet mention this to the dr as it is not uncommon.  Geed luck and take care. I also take aleve as it may be arthritis.

Thanks for the replies, I am currently on Percocet, about 4 per day and I just started Neurontin, 300 mg 4 times per day. The Neurontin is helping but the daily pain is still pretty constant. I will mention this to my oncologist next week. The pain was so intense Sunday morning I almost woke up my wife and her take me to the ER, scary.

Amy, please share you findings after you meet with the specialist. I look forward to your findings.

Hi everyone,

I am over the hill as far as MGUS goes, I am now MM since April and on Velcade/Dex.  My legs have hurt for years ( because I have had multiple back surgeries)but only recently are they going numb and now my feet feel like they are full of splinters which I presume is neuropathy.  I try to tough it out but last night I couldn't stand my feet to touch the sheets, I lotioned them and then put them up on pillows.. Slept like a baby...I can't take neurontin as when my daughter took it for a couple of years, the docs think that is what shut down her stomach and now she is tube fed, it also caused her to beome very forgetful and even though it has been years, her memory is still not great.. Since we are directly related no one wants to give me anything.  But Vicodin seems to help when it is bad.  I try not to take pain pills and just tough it out unless it is very bad.  Now my left wrist is vibrating like some one put their cell phone in my arm on vibrate.

Weird but true!  Gayle

I will definitely let you know what he says! I had a bad weekend also - but it was mostly lower back pain where I have two lower discs out of wack.  My sinuses have also been going crazy- sinus headaches every day, serious congestion and trouble breathing, etc...

Hmmm.....it's hard not to let it all get you down isn't it? But then this morning I woke up - and was so thankful that I could breathe! Life's simple pleasures!!

Hang in there!!

Hugs,

Amy

Thanks for the feedback. I looked up breakthrough pain and that is what it was. At least I'm not alone, sorry to hear so many of you suffer the same thing. Knowing what it is will help me not to freak out.

Be well,

Steve

May I suggest 500 mgs of magnesium twice daily, some liquid minerals and Calcium/Magnesium with vitamin D and a fatty snack at bedtime. Also add the B Vitamins like a B100 with all the B's. Calcim magnesium help relax smooth muscle and while you have nerve pain? the B's will help.  I keep saying it the doctors totally ignor mugus like it is nothing they are wrong, to me at this stage it is mm and should be treated as same. ASk them to suffer you pain. May I also suggest a warm bath with epsom salts when this gets unbearable.  There is an essential oil called Panaway and if you can get hold of it rub it on the affected area it does help the pain diminish and while it does not take it away it lessens it. It is made by a company called YOung living. All the best in your quest. MMS

On 6/29/2009 stevem57 wrote:

Thanks for the replies, I am currently on Percocet, about 4 per day and I just started Neurontin, 300 mg 4 times per day. The Neurontin is helping but the daily pain is still pretty constant. I will mention this to my oncologist next week. The pain was so intense Sunday morning I almost woke up my wife and her take me to the ER, scary.

Amy, please share you findings after you meet with the specialist. I look forward to your findings.