Please help. Severe nerve pain. In dialysis and rls so bad I have started cutting some of my treatment.

[ESRDRLS]

I need help. I thought I have my rls under control for awhile. I am now having severe depression. I was taking requip for some time which I found myself. I am taking a low does of Xanax which I have been on for at least 35 years. I was also put on Prozac but now off. I have end stage renal des. I have been on dialysis coming up in December 2019 for five years. It was the dialysis that caused me to start having the uncontrollable rls. I also have severe nerve damage from a tethered spinal cord from birth. They did not find it til I was 25. I am now 58. I have had two spinal cord surgeries and that is where I developed the nerve damage. Never should of had surgery for this condition as an adult but we were scared into the surgeries. The kidney failure is now due to the nerves being messed up and caused a neurogenic bladder which causes major pressure of the bladder which shoots urine back into my kidneys. I can’t get on the transplant list until something is done about the bladder. My local dr says my only option is to totally remove my bladder and drain my bladder out my side but is dangerous 6 hour surgery and he has seen patients have the surgery and be put on the back burner of the transplant list and never get a kidney. I am now having so much problem with rls that I am cutting my dialysis time cause I can’t sit thru the treatment cause of rls. I should mention I am on a low dose of OxyContin. I did better on a little higher dose but now with all the drs scared to prescribe I am severely limited on that. This is from the same dr that prescribed for me for over 15 years. I have been on lyrica but had to get off cause it actually made my pain worse and caused severe depression and seemed to make my rls worse. I took it for over a year. I went to a neurologist a few weeks ago and he just told me to keep me pain dr cause they are hard to come by and gave me samples of neupro patches 2 mg 24 hour patches. I had to stop them cause I felt after a good try I had a reaction and more rls. I pull my blood work at dialysis and I am not anomic and my ferrin level appears normal. The put iron directly into my machine during treatment. I also have a husband that I almost lost to severe lung problems. We are looking into a possible new treatment for him in mid October. He is 75. I am so hoping they can help him cause I don’t think I want to be here without him. Has anyone got any ideas of any help I can get to first make it thru my treatments with this rls hell and the severe nerve pain too. And maybe help with depression cause it appears that all the meds for depression the ssri meds actually cause rls. Oh I should mention that my rls is in the legs with the nerve damage pain but is heavily in my gut area. I literally feel at time if I could reach in and rip my guts out it would be a relief. My mother and father have passed in the last 2-5 years and my father suffered with severe rls all his life. My mother seem to develope rls the last few years of her life. The both were on heavy doses of OxyContin for severe pain issues also. I am also trying a new supplement in the last few days called restavin. I have none on bone in my knees so hard to excercise. I was scheduled for knee surgery but had to put that off cause of all the nerve pain that has gotten so bad that the dr even agreed I should wait til I had a better handle on the nerve pain and rls cause we did not feel I would make it thru just recovering in bed due to the nerve pain on top of the rehab and rls. Please if anyone can offer help it would be greatly appreciated. I am literally scared to go to bed at night and now scared to do dialysis cause of cutting my treatment time.

[Madlegs1]

I'm sending you a private message re a possible strategy.

[ESRDRLS in reply to Madlegs1]

This may sound silly but I can’t seem to find where I would get your private massage at. Can you help me with that.

[Madlegs1 in reply to ESRDRLS]

I have since read up on your history, and my advice to threaten extreme personal self harm is irrelevant, considering your high dose of Oxycontin.

Your case is so complex ,it needs very competent professional help.

I'm so sorry if I had raised your hopes, but you have got some very good advice in this post.

All the best.

At the top of this page( I'm on a mobile phone) there is a twin bubble with little red number beside it. Tap on that to get into messages.

[Hidden]

I am so sorry to hear all what you have and going through, you are a brave person and a strong one to cope with so much going on with you and your husband. I hope Madlegs has some good advice for you which will help.

[Joolsg]

I am so sorry you are going through such a tough time. To have bladder problems and kidney failure & RLS is downright **** and completely unfair!

I have attached sone information about iron problems. You mention that your iron levels are fine and that you are given iron at the same time as dialysis but make sure your serum ferritin is above 100 and serum iron above 60.

This extract discusses erythropoietin- it’s a common problem in kidney patients.

“Patients with altered renal function produce less erythropoietin, with a consequent reduction of erythropoiesis, which, in a not yet fully understood way, reduces the cotransport of iron to the CNS and medulla [21].

Regarding hemoglobin and hematocrit levels, the results diverge, in a study with hemodialysis patients only; there was a relationship between RLS in dialysis patients and a decrease in hemoglobin () [26]; however, other recent studies have not found any type of association [13, 17]. In a recent meta-analysis by Mao et al. [27], in which 23 studies were included, dialysis patients with RLS had markedly lower levels of hemoglobin (Hb)/iron compared to non-RLS in global populations.”

I really hope you can raise your iron levels sufficiently to give you some relief. I also hope you can resolve the backing up of urine to the kidneys so you can get a transplant. Does intermittent self catheterisation help at all with this? Have you seen a specialist urologist or just your GP?

I wish I could offer more advice and/or a solution.

[ESRDRLS in reply to Joolsg]

Thank you so much for your reply. I knew there had to be something I did not include. I have ad an “indewlling foley” in place for about 12 years. I have self maintained it and honestly the drs are amazed but it does not kept the bladder pressure down to kept my kidneys safe. They sent me home with it years ago for the backup problem but I have such high pres that it does not protect my kidneys. Part of the damage that was done medsin the spinal cord surgery was the cut the nerves to my bladder and bowels also. I had been going to a urologist that specializes in neurogenic bladders. I went to him last last March of this year. I think becaause he is getting ready to retire he does not want to go any furture. The last thing he did was all the testing to see after doubling my bladder meds ditropan xl now at 30 mg from 15 mg 2 times a day he asked me to try Botox shots in my bladder because he felt the pres in my bladder actually increased. I went in and he put 300 Botox shots in my bladder in his office. It did nothing but he asked if I wanted to do it again. After asking him if he felt it would do any good and his answer was no I turned it down. To be honest if there was any hope I would do it but since not and after going thru that once. Very painful I had no desire to do it again.

[Joolsg in reply to ESRDRLS]

Oh that’s not good. Normally botox helps an over active bladder ( very common in MS) but I’ve never heard it used for your condition before. It sounds to me like you need to see a younger, pro active urologist who will be more up to date with research and new treatments. Don’t accept your situation- get an urgent referral to a new, younger urologist.

In dwelling catheters may add to the problem by causing frequent ITIs.

Are you in the USA or here in the UK. I can recommend a good urologist here in London. I have similar bladder issues caused by MS and he is great at monitoring the reflux problem.

A new urologist may have the solution.

[ESRDRLS in reply to Joolsg]

Thank you so much for your help and info. I am in the USA. Texas to be specific but it seems there is more info and help on some of theses issues especially regarding rls. A lot of drs here are getting more familiar but a lot do not take it as serious as I think they should. You mention rls you then have to tell them what it means then they act like you have complain about something no more serious than a pimple or hang nail.

[Joolsg in reply to ESRDRLS]

Dr William Ondo is in Houston Texas ( I know it’s a massive state) so you could try to see him. He’s bound to know a top urologist nearby.

[ESRDRLS in reply to Joolsg]

Yes you are night in massive state. I am actually closer to San Antonio. It is only a couple to 3 hours from Houston. I will be calling the dr you sent me. Thank you so very much.

[Shumbah in reply to ESRDRLS]

Is marijuana legal in Texas ?

[ESRDRLS in reply to Shumbah]

I so wish is was legal. A lot of us are waiting for that change in the law.

[Annieapple]

Oh gosh I am feeling for you from the depth of my being. So sorry and sad that you are enduring all this suffering. I am praying that the advice given to you here will be of some help & hope to you. You are incredibly brave and very special. Do keep talking to your medical team. Hopefully one of them will come up with something new to help you. Big hugs. Xx

[ESRDRLS in reply to Annieapple]

Bless you for your heartfelt comments. It does help.

[Annieapple in reply to ESRDRLS]

Another hug! 🤗

[ESRDRLS in reply to Annieapple]

Thank you so much and God bless you for taking the time to comment. I will be looking into all your suggestions.

[Hidden]

You've had lots of good advice and there's not really much I can add. I do appreciate so much that you are between a rock and a hard place and it seems a solution to one of your problems is prevented because it affects another. i.e. the urostomy.

Your RLS unfortunately is a result of your renal failure.

I would second the suggestion that you find other doctors, i.e. neurologists and urologists.

I have a suggestion which you will probably hate as a lot of people react as if I'm suggesting that their very real physical problems are all their mind (imagination). They're not, but you may benefit from some psychological therapy. Particularly a chronic pain specialist who can support you in non pharmacological pain management. Other psychological therapies can help more generally and I would particularly recommend Mindfuless CBT.

In the UK Mindfulness CBT is accepted as an effective strategy for dealing with anxiety, depression, chronic pain and for coping with cancer.

Here's some information

medicalnewstoday.com/articl...

[ESRDRLS in reply to Hidden]

For some reason the article you sent a link to will not come up as I was very interested in reading it. I so appreciate any advice and info. I must not have mentioned o have been with a chronic pain management clinic for about 15 years. I am on the USA and most of the drs here are cutting most medications. Mainly any amount of opioids when had most of my issues under control at a very low dose. Even my kidney dr thinks I should have been left on the regiment I was on. Someone asked if marijuana was legal in Texas and unfortunately it has yet to be legalized here although in the past I have tried it and it helped somewhat but my pain dr will fire any patient that tests positive for it so that is not an option at this time. My kidney dr has also made his opinion known that he is for marijuana and said most of his dialysis patients are on it but I can’t take that change being it’s still illegal.

[Zedz]

This comment doesn’t even scratch the surface but next dialysis maybe try a weighted blanket. See if that will help at all to keep you there for while treatment.