| Author |
Message |
Alaskagal
Member
Username: Cheathers
Post Number: 181
Registered: 06-2011
| | Posted on Tuesday, September 02, 2014 - 04:03 pm: | 
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I am three years post transplant, and my kidney seems to be doing great, but I fear that if my pain in my feet, and worsening aches and pains increase, I will be immobile, and I feel that besides a very healthy diet, exercise is very important. I am to the point that my feet are killing me, even when I am off of them and trying to sleep. Now my bp has gone up and I had to start taking Bystolic. I hope that the transplant team in Seattle, or my nephrologist here will have some help, but I suspect it will only be more pills, thus more side effects. I am quite discouraged and depressed. And ideas?
| Kidney tx Aug. 23, 2011 Seattle Swedish Hospital. |
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 18077
Registered: 05-2003
| | Posted on Tuesday, September 02, 2014 - 04:49 pm: |
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Dear Alaskagal 
I was thinking about you yesterday. This is so strange but this always happens to me when I think of someone, I hear from them.
I hope you feel better. How about if you try some yoga poses? When you practice yoga often, you will feel and see results.
What is the cause of your pain? Do you know?
Have you tried Arnica gel for pain? It is homeopathic.
Tell me more
Take care of yourself!
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bill s
Member
Username: Bill_s
Post Number: 164
Registered: 08-2011
| | Posted on Tuesday, September 02, 2014 - 05:10 pm: |
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If you don't have a medical condition causing the pain, hypnosis might be useful. Read up on hypnosis for pain on the web and see if it could work for you. If you don't have a hypnotist in your area, there are self hypnosis instructions on the web. Good luck! |
oowallst
Member
Username: Oowallst
Post Number: 4
Registered: 08-2014
| | Posted on Tuesday, September 02, 2014 - 09:55 pm: |
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Hi Alaskagal,
I hope you our feeling better soon. I am also 3+ years post kidney transplant .Please try to Not Worry or Stress about a fear you have. Do you know what the specific problem is? There are many exercises you can do. You are not immobile now, try some yoga poses like Rise suggested. God bless and take care. |
Gene
Member
Username: Gene2x
Post Number: 58
Registered: 11-2011
| | Posted on Thursday, September 04, 2014 - 08:55 am: |
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Here's a description of peripheral neuropathy. Possibly it describes what you're experiencing.
Peripheral neuropathy is disorder of nerve(s) apart from the brain and spinal cord. Patients with peripheral neuropathy may have tingling, numbness, unusual sensations, weakness, or burning pain in the affected area. Oftentimes, the symptoms are symmetrical and involve both hands and feet.
It may be possible that your meds are contributing to something like this.
Kidney Tx - Aug 4, 2011
VA Pittsburgh Health Care Center
Follow UPMC non-steroidal protocol
Live donor was my radio operator in Vietnam
1/6 match |
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Kidneyboy
Member
Username: Kidneyboy
Post Number: 78
Registered: 01-2012
| | Posted on Tuesday, September 09, 2014 - 01:59 pm: |
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Hi Alaskagal,
If it is indeed Neuropathy it would account for the pain, even when trying to rest. I have severe Neuropathy and would not be able to sleep at times because of "buzzing nerves" and pain. The present "cure" is forms of a drug Gabapentin, perhaps under the brand name Lyrica. While it IS effective. I quickly became dependent on it. I was like a junkie starring at the clock looking for the next dose. I hope you find relief from these symptoms and you regain your good health. |
Alaskagal
Member
Username: Cheathers
Post Number: 182
Registered: 06-2011
| | Posted on Saturday, September 27, 2014 - 07:06 pm: |
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OK!!! I have some good news! After struggling for a LONG time with this, to the point of severe depression... I finally pulled myself up by the bootstraps and got some help. #1 I got my doctor to drop a bp med I was taking and change it. #2 I started taking magnesium. #3 I went to a PT and got some exercises for my lower back that really leaved sciatica. #4 I bought a LaserTouchOne tool. It is amazing. Here is where I learned about it from a local news program: http://www.ktuu.com/news/news/cold-laser-pain-treatment-reaches-last-frontier/27104050
I am sure that I will need to "test" this with a long hike... but my gosh, sleeping at night is a DREAM COME TRUE!
| Kidney tx Aug. 23, 2011 Seattle Swedish Hospital. |
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 18096
Registered: 05-2003
| | Posted on Sunday, September 28, 2014 - 10:12 am: |
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Hi Alaskagal
I am so happy to hear this good news.
My husband said that he had tried out a similar machine when he had chiropractic care.
Keep up informed!!
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Alaskagal
Member
Username: Cheathers
Post Number: 183
Registered: 06-2011
| | Posted on Sunday, September 28, 2014 - 07:28 pm: |
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Thanks! Yes, I am so very thankful.... I was getting pretty depressed. I am not sure just how much magnesium is safe or harmful. At 66 years young I have never had a kidney stone, and there is always a lot to learn about minerals, etc... At this point, I will kind of keep going and try not to "overkill", then see if my doc can give me a clue, although when I asked him at last visit if my magnesium as at a good level he said it was fine. But you know... medical folks....
I am taking a very low dose of Norvasc (no longer Bystolic) which is about 2 mg occasionally. Still careful with diet. I just think that it is so important to find other ways to take care of our symptoms without drugs, and to also be alert to what counters our anti-rejections drugs.
Blessings all!
| Kidney tx Aug. 23, 2011 Seattle Swedish Hospital. |
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Gene
Member
Username: Gene2x
Post Number: 60
Registered: 11-2011
| | Posted on Tuesday, September 30, 2014 - 10:28 am: |
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Hey Gal,
My docs have me on 800mg of magnesium daily. My magnesium levels are always in the normal range on that dose. i've been on it since my transplant in Aug 11.
Kidney Tx - Aug 4, 2011
VA Pittsburgh Health Care Center
Follow UPMC non-steroidal protocol
Live donor was my radio operator in Vietnam
1/6 match |
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Alaskagal
Member
Username: Cheathers
Post Number: 184
Registered: 06-2011
| | Posted on Tuesday, September 30, 2014 - 02:54 pm: |
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Aha! Well, I guess I will let my doc know that he dropped the ball! What a difference it makes, and not only for our feet, bones and other pains, but the heart is a pretty important muscle!!! Yes, you are only a week or so longer on this than I am. Ha!
| Kidney tx Aug. 23, 2011 Seattle Swedish Hospital. |
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 18097
Registered: 05-2003
| | Posted on Tuesday, September 30, 2014 - 02:59 pm: |
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Magnesium is very important for your heart
If I am low in Magnesium, I will get heart palpitations. My heart is otherwise in great condition.
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Alaskagal
Member
Username: Cheathers
Post Number: 185
Registered: 06-2011
| | Posted on Tuesday, September 30, 2014 - 07:14 pm: |
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Yes, this really disappoints me about my nephrologist. I honestly think that he relies too much on my taking care of myself, but I COULD use a little help! Dang. Before kidney failure, I used to take magnesium all the time in the form of Natural Calm powder…. I will certainly continue. I feel like this has certainly added to a LOT of my misery the last 3 years, and especially the last year. The drugs we have to take leach out a lot of magnesium too.
Thanks friends!!!
| Kidney tx Aug. 23, 2011 Seattle Swedish Hospital. |
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bill s
Member
Username: Bill_s
Post Number: 166
Registered: 08-2011
| | Posted on Tuesday, September 30, 2014 - 11:08 pm: |
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I'm glad you're able to control your pain and are no longer suffering.
I was surprised to hear you need additional magnesium. I periodically have my blood magnesium measured and it has always been within the acceptable limits of 1.7 to 2.3 over the past 3+ years although I take no additional Mg. Your doctors should give you a copy of your results so that you know your exact value. If your magnesium value is good, you could then look for other possible causes. I believe it's the law that you have to be given written copies of your test results if you request them.
Good luck! |
Alaskagal
Member
Username: Cheathers
Post Number: 186
Registered: 06-2011
| | Posted on Friday, October 03, 2014 - 03:30 pm: |
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Thanks Bill, yes, I also get all of my copies of my labs every time, but I see nothing about magnesium. I will have to press for that to happen in the next labs, and of course, I won't be able to go back and find THAT out.
| Kidney tx Aug. 23, 2011 Seattle Swedish Hospital. |
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bill s
Member
Username: Bill_s
Post Number: 167
Registered: 08-2011
| | Posted on Saturday, October 04, 2014 - 02:05 am: |
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You might also ask for tests of other blood constituents you are concerned about. I've had vitamin B12, vitamin D, uric acid measured at least once along with the standard tests (phosphorous, potassium, glucose, ALT (liver test), sodium, etc.). |
Alaskagal
Member
Username: Cheathers
Post Number: 187
Registered: 06-2011
| | Posted on Saturday, October 04, 2014 - 03:34 pm: |
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Thanks Bill, when I think of it, I sure would be more proactive for others, might as well do so for myself. One can just "go for it" if you don't have these issues, and drugs to deal with... but would rather be sure before self treatments.
| Kidney tx Aug. 23, 2011 Seattle Swedish Hospital. |
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bill s
Member
Username: Bill_s
Post Number: 168
Registered: 08-2011
| | Posted on Saturday, October 04, 2014 - 08:44 pm: |
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Alaskagal - forgot to mention an interesting web site of another "Alaskagal". Google the three words
Eagle
Cat
Fox
For some interesting videos.
Enjoy, Bill |
Alaskagal
Member
Username: Cheathers
Post Number: 188
Registered: 06-2011
| | Posted on Saturday, October 04, 2014 - 09:28 pm: |
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Ohhhhh, Bill, I didn't realize she went by Alaskagal! Yes, she is in Unalaska. We spent some time there a couple decades back cleaning up WW2 debris, eagles are like rats, so thick!
| Kidney tx Aug. 23, 2011 Seattle Swedish Hospital. |
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Rob C
Member
Username: Rob_c
Post Number: 294
Registered: 09-2007
| | Posted on Friday, October 10, 2014 - 09:40 pm: |
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How much Prednisone are you taking? I had the same thing until they lowered my dose. |
Alaskagal
Member
Username: Cheathers
Post Number: 190
Registered: 06-2011
| | Posted on Friday, October 10, 2014 - 11:01 pm: |
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Rob, I don't take any, as Seattle Swedish takes their KPX patients off when they are released from the hospital. I must say, the improvement is still with me... I am wondering if I could take a very long hike, but just every day stuff is doable.
| Kidney tx Aug. 23, 2011 Seattle Swedish Hospital. |
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