Anyone here dealing with Fibromyalgia on top of nephrectomy??

Gale_50

Hi all!  I am now 3 weeks post surgery left radical nephrectomy, a 4cm clear cell carcinoma, contained, doctor feels they got it all so very grateful for that relief. Prior to this unexpected finding of kidney cancer, I had been on about an 8 yr quest from doctor to doctor to figure out my chronic pain, post exertion malaise, fatigue syndrome. Not much luck, they have had me on Humira for 2 years and tramadol for pain. Has been so discouraging, and I actually felt some relief that with an actual diagnosis, this may have been the explanation for my pain and chronic fatigue. So here I am now, telling myself I should be feeling better by now, 3 weeks after surgery so should be able to stop Percocet, trying to be more active to regain strength....not so much!  Now I am in a big flare, all the prior pain is returning after the short reprieve on Percocet. I have horrible night sweats and my hip/femur bones are so painful to touch all the time (even on pain med). So reaching out to see if others have dealt with both together?  Also, how long after surgery were others able to stop pain meds and actually feel well?  Another struggle is my husband also expects I should be "cured" and brand new after surgery recovery. Told him tonight my pain is bad and his response was "my legs and back hurt too".  So looking to others who have been in my shoes that might have some good information for me. Always harder to stay upbeat when you are hurting....thanks for any takes on this.  Hope not many others have had the same situation, but if so thank you for sharing.

Mamasha

I have similar pain from an unrelated back problem

Hi, I am new to the board and reading in while I wait for confirmation of my diagnosis, which is likely to be advanced kidney cancer, and surgery to remove the tumour on my left side.

 

But I could not help replying because the same thing is happening to me under different circumstances. My new oncologist is convinced that the tumour is pressing on a nerve but frankly I have had this kind of pain for years while I had no inkling of a kidney problem. The ostensible reason has always been inflammation of my hip joints ("sacroiliitis") and other consequences of a slipped disc in my lower back which seem to have got worse recently with lack of exercise and a lot of time spent on my back, as I have been recovering from the compression fracture which tipped off the doctor to the cancer.

 

I was referred to a neurologist who prescribed Movalis and Lyrica, which seem to help with the pain lower down my leg but not in my hip. The only thing that has helped is exercise - simple yoga and Pilates moves which rotate the hip in its socket.

 

It must be hard after surgery but see what happens if you give it some movement to the extent possible, and make sure you don't have an unrelated condition which needs to be treated separately. The pain can be really terrible and hard to understand for someone who hasn't had it.

 

I guess that is by way of introduction. I would also be interested to know how long it took for people to recover from their surgery to the extent that they could go about their daily lives, when they could care for their kids and go back to work, and whether follow up treatment was compatible with reasonably normal work and family life. Also when they were able to travel, since my place of treatment is a three hour flight away from my home.

 

Gale, I hope you get some relief. Best wishes to all.

 

Gale_50

Mamasha said:

I have similar pain from an unrelated back problem

Hi, I am new to the board and reading in while I wait for confirmation of my diagnosis, which is likely to be advanced kidney cancer, and surgery to remove the tumour on my left side.

 

But I could not help replying because the same thing is happening to me under different circumstances. My new oncologist is convinced that the tumour is pressing on a nerve but frankly I have had this kind of pain for years while I had no inkling of a kidney problem. The ostensible reason has always been inflammation of my hip joints ("sacroiliitis") and other consequences of a slipped disc in my lower back which seem to have got worse recently with lack of exercise and a lot of time spent on my back, as I have been recovering from the compression fracture which tipped off the doctor to the cancer.

 

I was referred to a neurologist who prescribed Movalis and Lyrica, which seem to help with the pain lower down my leg but not in my hip. The only thing that has helped is exercise - simple yoga and Pilates moves which rotate the hip in its socket.

 

It must be hard after surgery but see what happens if you give it some movement to the extent possible, and make sure you don't have an unrelated condition which needs to be treated separately. The pain can be really terrible and hard to understand for someone who hasn't had it.

 

I guess that is by way of introduction. I would also be interested to know how long it took for people to recover from their surgery to the extent that they could go about their daily lives, when they could care for their kids and go back to work, and whether follow up treatment was compatible with reasonably normal work and family life. Also when they were able to travel, since my place of treatment is a three hour flight away from my home.

 

Gale, I hope you get some relief. Best wishes to all.

 

Hello Mamasha, thank you for sharing. It seems you are starting off in similar place, yes. I also travel for treatment, but 2 hr drive only. With the extra challenge of daily pain, travel part itself is daunting. I am sorry to hear you may have advanced cancer, let's hope it will ultimately be a better report than that when they go forward. Please keep us posted on your situation as it unfolds. You will find incredible support on this site. We can be thankful in part for the pain, as it is the reason our cancer was detected though! As for the pre-existing pain, I hope others share more input on their recovery time and experiences. May I ask your age? You comment about caring for children so sounds like you are still young:) That should be a plus for quicker recovery. A side note to you on the Lyrica, if you are still using. I tried that for a few months, initially seemed to help pain, but then not. Doctor said I could just stop using since I was not epileptic and had serious withdrawals! Just a heads up if you decide to stop it, wean off....very scary experience. So my prayers to you that you will do well and  have a quick resolution!  Read lots of posts out here for encouragement and positive words! Keep us up on how you are doing, OK?

Blessings, Gale

Djinnie

Pain post op

Hi Gale,

I sympathise with you with regards to the pain. I am just over two weeks post op for a partial nephrectomy on my right kidney. I seemed to be doing pretty well and was able to reduce my pain meds. However yesterday the pain returned in a big way so I am now building the pain meds back up in my system. I have not experienced pain quite like it, I am resting today in the hope that things will settle again soon. I do not have fibromyalgia, but I do have experience of chronic fatigue, or ME my daughter suffered from it from when she was 10yr old until she was 16 yrs. The ME in itself is difficult enough to deal with so this combination must be very hard for you.

I assume you were having pain in you hips before the op. but would tell you that I am experiencing inflammation in my pelvic bones. I feel that the whole of my torso below my breast bone is inflamed. I also get a lot of pain in my back and bloating. I assume all this goes with the territory, but it does not make it easy to deal with. I  get very tired and take regular rests throughout the day. I think you just have to pay close attention to your body, when it needs to rest heed the request.

Your husband seems to be expecting a little too much if he thinks you should be over it by now. I am sure if the shoe was on the other foot it would be a different story. When my husband is sick with a cold I have to dig out my nurses hat, he is totally down tools. He has stepped up to the plate with this though, give him his due.

Right now you are dealing with recovering from cancer, but I know that there are alternative treatments for Fibro out there and we did get our daughter out of bed and back on her feet. She became a personal trainer and now works full time, so there is always hope, just never give up. 

Our operations were very close, let us work on getting fully fit together. Keep in touch we can keep each others spirits up.

 

 

All the best

 

Djinnie

 

 

Gale_50

Djinnie said:

Pain post op

Hi Gale,

I sympathise with you with regards to the pain. I am just over two weeks post op for a partial nephrectomy on my right kidney. I seemed to be doing pretty well and was able to reduce my pain meds. However yesterday the pain returned in a big way so I am now building the pain meds back up in my system. I have not experienced pain quite like it, I am resting today in the hope that things will settle again soon. I do not have fibromyalgia, but I do have experience of chronic fatigue, or ME my daughter suffered from it from when she was 10yr old until she was 16 yrs. The ME in itself is difficult enough to deal with so this combination must be very hard for you.

I assume you were having pain in you hips before the op. but would tell you that I am experiencing inflammation in my pelvic bones. I feel that the whole of my torso below my breast bone is inflamed. I also get a lot of pain in my back and bloating. I assume all this goes with the territory, but it does not make it easy to deal with. I  get very tired and take regular rests throughout the day. I think you just have to pay close attention to your body, when it needs to rest heed the request.

Your husband seems to be expecting a little too much if he thinks you should be over it by now. I am sure if the shoe was on the other foot it would be a different story. When my husband is sick with a cold I have to dig out my nurses hat, he is totally down tools. He has stepped up to the plate with this though, give him his due.

Right now you are dealing with recovering from cancer, but I know that there are alternative treatments for Fibro out there and we did get our daughter out of bed and back on her feet. She became a personal trainer and now works full time, so there is always hope, just never give up. 

Our operations were very close, let us work on getting fully fit together. Keep in touch we can keep each others spirits up.

 

 

All the best

 

Djinnie

 

 

One week more

Hello Djinnie, thanks for your reply! Well I had my surgery a whole week before you so have vast experience to share:). But actually, a couple of things anyway. You mentioned you also thought you could stop pain meds and that didn't turn out well....kind of tells me that we are similar in that we are anxious to just be well and healed! A good sign that we are thinking positive I believe, however as you said, at this point our bodies are in charge so must heed what they tell us. At two weeks you are REALLY anxious to be better, I did not feel even close to ready at that point, so I do hope today you are able to get on top of your pain again. Helped me to hear you are having pain also in back, pelvis etc. So probably some of that is still from my surgery. I got excited and overdid activities a couple days ago so paid a steep price, another flare. 

Read your about me page, I imagine with your history of cancers it is a challenging balance to stay positive and avoid too much worry as you have to pay attention to any flags. A happy story to hear your daughter was healed from her ME! What a blessing! I spent a couple years with a super alternative doctor, also a big reader and have read lots of books for self help. I returned to traditional doctor about a year ago as I could not get over the flares after minimal exertion whether mental or physical, and with all the wonderful lifestyle changes, diet and supplements, it became a flag to me that I needed to pursue other help. So here I am, the rest of the story. Grateful I listened to my inner nudgings and insisted the doctors keep looking. Cancer is gone, totally I hope. I see surgeon on April 25 for more details there. 

Yes, let's stay in touch and compare notes and progress:). I plan on a day of rest (a healthy bit of gentle exercise in there), and wish the same to you and others in our shoes. Hopefully some laughter also, such good medicine. Releases all kinds of the good chemicals we need to be healthy! 

Take care all, Gale