has anyone ever felt worse being on dialysis??
i feel like my symptoms are worse after dialysis then they were before going in.
lately every time i go in for a session something goes wrong. it’s very frustrating
and my specialists said about 4-6 weeks until i start feeling better but i’m almost feeling worse
any advice is greatly appreciated
Hi, all I can say is hang in there. It sounds like you are going through what my husband did when he first started dialysis. Every time was rough, something always happens. From getting muscle cramps in his arms and legs, to the nurses having a hard time getting I getting into his fistula to blood pressure dropping so low he actually passed out to feeing in his words “like someone ran him over with a train then backed up and did it again”. Sometimes it does take longer than this 6 weeks. Just remember to stay strong as you can be and always voice to your doctors and nurses when your not feeling right. Stay as hydrated as possible and gets lots of rest. You need to listen to what your body is telling you. Rest and let things get accustomed to what is happening to it. Everyone reacts differently to dialysis, remember to listen to your body. Love and hugs.
thank you for taking the time to reply to me, as bad as it sounds i am glad i am not alone in this.
You are absolutely not alone in this. It’s like riding a roller coaster with hills and valleys and twists and turns. It will get better just hang in there. Live and hugs.
Hi Renalrose.I started haemodialysis at the end of May. I have had nothing but issues with my fistula, potassium levels, cramp , lack of energy and just feeling blah. Anytime anyone asked me hiw I felt my standard reply was...i don't feel any worse but I dont feel any better either. I would hear all the other patients say they felt tired after dialysis but great the next day. I am now on blunt needles and they are now taking off 2400 fluid. I still urinate and I felt previously they were taking off too much at 1600. I would get awful ramp for days in my legs. However since they started taking 2400 off me, I am starting to feel, i have turned a corner. I wouldnt say I felt great or am full of energy. I still get cramping just before the end if my session. If I could just get rid of the brain fog, I would say I actually feel more "normal". I have stamina but no energy, I am also starting to take a small interest in other things. Unfortunately life is just work or dialysis right now. Hope things start to improve for you but believe me when I say..i know exactly what you are going through. Take care xx
I felt that way too. I do home therapy and every day something puts a bump in the treatment. Its very frustrating! I started to feel better once the swelling and fluid was removed. It took some time. A few months for me. I eventually did the one thing that would make me happy and recharge and I went to the beach. I cried the whole way there because I was so sick. But then I felt like myself again. And I won’t let that energy stop or else I won’t get off of my couch. Do something that makes YOU happy and feel good. It’s needed to cleanse your mind and spirit. I hope it helps you feel better. It will get better and you’ll start to understand your body more and what works for you. There’s no prescription everyone is different. It’s very physically draining and mentally it’s hard to comprehend.
All I can add is you just have to hang in there and try to assume a positive attitude (fake it til you make it!) Are the nurses and techs helping you manage the cramps by taking you down to minimum, giving you oxygen and having you brace your affected leg against their body? It also helps if they can correctly determine your dry weight and little by little take enough fluid off to make you feel better. Brain fog is harder to combat because dialysis only cleans your blood 3 days a week for 3-4 hours or so instead of the 24/7 healthy kidneys do. It's caused by the buildup of waste products in your body that your kidneys can't process and eliminate. You should feel better in time and it does help to be strict about your dialysis diet and controlling fluids intake. Don't be afraid to ask the staff for help when you need it and if you have any questions or need them to explain something in plain language.
My husband has been on dialysis now 9 mònths some days are good some bad the itching is worse for him and feeling tired we try and go for a short walk which helps and he is a fighter for his itching I use E45 cream but I read today Vaseline is good it has no water in it
Have they put your husband on binders ? There is phosphorus in food that causes itching. Once I was on binders the horrible itching stopped.
I wish I could be more encouraging but one year on hemodialysis I felt lousy all the time, particularly right after hemodialysis. I switched to home peritoneal at night. I loved it. Felt great , lived a normal life, worked etc. The peritoneal stopped working after two years and I have now been back on in center hemodialysis for the past year, which I hate and feel lousy on. I haven’t a partner or I would do home hemodialysis. Look at your options. I hear many say it takes a while for your body to adjust. This is just my experience. I wish you the best.
My 86 year old father has been on dialysis 2+ years and ALWAYS feels worse and, literally, IS worse afterward...way low BP, tunnel vision, dizziness, hours/1/2 day to recuperate. He has zero CKD / ESRD symptoms aside from bloodwork that reveal he even needs to dialyze (bloodwork done when he broke his hip) and I must say I'm amazed that he continues to agree to go/be transported for the thrice-weekly, 3+ hour procedure. He just recently skipped 7 days b/c of being on antibiotics (diarrhea afterward) for pulmonary edema resulting likely from pneumonia and had zero sensations or side effects from not going to dialysis. I realize he is an exception to the rule but I admire each and every one of you who has to go through this journey.
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