Severe fatigue from stage 4 PKD, 16% gfr has finally struck, actually I just had my blood drawn again but don't have the numbers yet. Exhaustion has set in. All I want to do is sleep, but life has to go on, work etc. I just wanted to hear about others experience as I have managed well until now, it was a downhill spiral after that strenuous business trip I took last month. I honestly cannot believe I can feel this awful day after day. My blessings and thoughts and prayers to all of you who are suffering through any type of problems from CKD/PKD. The doc's don't seem to acknowledge the relation to the disease even though it is documented. I am just told that I will feel better once I start dialysis, and that doesn't really help. I am looking for reassurance that it is O.K. to slow down and rest if I need to, because I am just not use to this.
Fatigue from PKD has finally hit: Severe... - Kidney Disease
Fatigue from PKD has finally hit
You have to do what is best for you. Slow down and relax more to avoid all the pitfalls of life and chronic disease. I remember how tired you said you were when you came back from that trip. Haven't heard from you in a bit and sorry to hear that you are still dealing with the after-effects of the trip. You can still hold off dialysis but it still the optimum time to look at your options. Have you made any decisions yet on which way you will go for treatment?
I know you're aware of the diet and exercise components to CKD and I'm sure you know that when you start dialysis you will probably change your diet and exercise regimen will change. Have you given a lot of thought to those changes? Hope to hear from you soon. Stay healthy and in good spirits. We are all pulling for you.
I am planning to go for a living donor or cadaver as I am working with a transplant team, however my nephrologist has prepped me for dialysis in case it becomes necessary, I am hoping that will not be the case. I had two living donors one cousin and one friend, but both have had a change of heart at this point so I am still looking. Worse case, dialysis and hopefully a cadaver. The nephrologist wants to hold off on dialysis until 10 %, I will hold off even further if I am able. I understand about my diet and exercise, however I am trying very hard to work through my eating disorder issues / over exercise issues in order to better help my situation because I understand how very important it is, complicated with the eating disorder for sure. Thank you for your consistent flow of wonderful support and information.
Yes, it definitely o.k. to slow down and rest. Every so often I have a day of complete exhaustion. While I do not stay in bed all day, I do as little as possible that day. My body needs it.
Hi Frankie24, I can completely relate to your fatigue and exhaustion at this point. I also have/had PKD (both diseased kidneys removed). It is entirely possible at this point for you to be anemic and/or have low iron stores (they work together) which could be contributing to your fatigue. Give yourself adequate time for rest and lower your expectations so you won't feel the guilt. YOU come first at this point in life. Allow yourself the leeway you'll need to recoup, rest and relax. You may want to call your doc and get results to see if you're anemic or low on iron. There are supplements to help keep your hemoglobin and iron at optimum levels. Blessings
Thank you all for your words of support, they are much needed and appreciated, more than you know !
I am being treated for stage 4 acute renal failure..
I'm on Prednisone for 30 days...
1000mg a day day for 3 days straight then pill form for the rest of the month.
On alternative months I'm on a chemotherapy drug called Cyclophosimide..
The fatigue is very bad..
Sometimes I'min bed for 5 days at a clip from overwhelming fatigue..
In the beginning I tried to push myself and fight the fatigue but now realize their are good days and bad days..
Taking it easy is fine..
When you feel tired resting can only do good..
Please hang in there it will get better..
I am at 9% to date and still working, and my family thinks I should still be working out at the gym and doing everything I have always done without a problem, very frustrating, I appreciate you taking the time to respond. My best to you !
I have the same problem with my family. Growing up I was always fit and slim. Until I started gaining weight out of the blue and had immobilizing exhaustion. After 4 yrs and countless bloodwork and Drs I was finally properly diagnosed with end stage renal disease. Not stage 1 or even 4. But stage 5. I was floored and left very shaken and felt very alone. Although I have medical personnel in my family and even my husband is an RN, no one understood. I’m not even sure they really wanted to. It was a compartmentalization to them. Seeing me, still here. I must be ok. Not even I understood what I was going through physically or emotionally or especially and worse - painfully. So a couple of years into my diagnosis and doing whatever I can to balance my life as a “normal person” (I cont to work, travel, laugh, make sure everyone else was ok and fucking comfortable with MY DIAGNOSIS) with the reality of weight gain, mental struggle, embarrassment, body shame, painful and emotional stress, insomnia, neuropathy, depression and defensiveness, I am still told that I should be looking at my DIET as the reason I’m still 45 lbs over weight. Or that I should incorporate MORE EXERCISE into my life bc THATS the reason I’m overweight.
Not ONCE am I told - except by my amazing loving loyal freakishly perfect husband- that I only need to do what I can, to appreciate what I have NOW, that FIRST I must concentrate on getting a kidney and THEN worry about getting my size 6 back. And ONLY if I feel the need.
I have 2 sisters. Both whom I love respect and honor all the time. I only wish they’d utilize their tools they use on their daughters w me. Empowerment mind&body appreciation support and individualism. One is pretty good, hears me and is at least supportive. The other almost blatantly tells me I’m fat bc I don’t eat right (WHAT?? I promise that’s not it…) while she is 10 yrs younger, has a household staff, & flies private.
I guess tonight I’m just angry. I’m absolutely exhausted to the point that I can not finish getting my house ready for the family coming to visit. I’ve done what I could. But I feel at these points I could get into bed and never get out again. My brain screams at me to suck it up buttercup!! But my body is crying. I never knew that when someone said that their body was crying that it might not be an exaggeration.
Hi yes my gfr is 14 and i work also but i would get home so tired and sleep and i cut my hours of work back to just mornings and was still tired, i had iron infusion last week feel a bit better, just waiting for app for a fistula.
Thank you, I have unfortunately since my post started dialysis, not fun. It really doesn't help me a lot. My days on are horrible, my days off I am able to work and wasn't to bad until I suffered a stroke almost 3 weeks ago, now I have what I am told is called stroke fatigue it just seems one thing after another. I would give up if it wasn't for my son ! Thanks raelers for sharing and I wish you the best.
Hang in there. The good days are always worth going thru the bad ones. 🙏🏻 You’re in my prayers.
does anyone know how to locate a plant based RD specializing in PKD?
Finally got the Diagnosis!
The time has come....
Newley Diagnosed
