Lots of side effects can’t determine cause

[Cathy12156dsrjad]

I have 8 doctors and I’d like to know how some of u deal with, for example: extreme fatigue, muscle weakness, and low concentration levels (at times). I have ckd stage 3 (gfr31) so should I feel this tired and weak? Or could thyroid or low vitamins or something missing in diet? I eat properly I want to do more for my family and grandchildren and church family I feel so helpless and one day ok and one day not Had so many tests and different specialists but never weak at time of appointment (wouldn’t u know it). A few family members have Myotonic Dystrophy very slight. I do not believe I have this because it only get bad when sitting still for a long time and only in legs. After moving legs and stretching them can get up and walk but more and more getting fatigued and weak. All tests with muscles, blood, etc. show nothing. Any help would so greatly be appreciated! God Bless

[lowraind]

Cathy,

This response might be helpful to you. It is from Zazzel, and it is to another person, but I think the things mentioned here will be helpful to you also, since extreme fatigue, muscle weakness, and low concentration levels are all a part of the ckd package:

I'm sorry you are in so much pain. It can be very frustrating. All of our bodies are different and handle pain differently, but consider trying alternative mindfullness methods as Bassetmommer suggested. I do Yoga almost daily and it really helps. Here is a link to free classes on YouTube which address your issues. youtube.com/user/yogawithad...

I also might suggest sleep hypnosis. It has done wonders for my anxiety level. It can also help reduction in pain. It works by sending sound waves and repeated messages to your brain while sleeping. It actually alters your brain. My favorite is Thomas Hall. He has quite a few for pain relief. Some are to listen to while sleeping and others while awake. Here is a link for the ones related to pain. youtube.com/user/sable4e/se... There are other people on YouTube who address meditation specifically for endrometreosis.

Other things to try are massage and or acupuncture. Many of the gyms these days have relatively low monthly fees if you are in the states. Some of them have hydromassage machines included in the package. I pay $20 a month and do a hydromassage every time which is free as part of the package. It is a 10 minute massage bed. It has also helped a lot.

Plus, you probably need to determine exactly how much function you have lost. Make sure to look at your labs and look at Davita.com or one of the other kidney sites to see what stage you are in. Many of us on here were not warned early on about our condition from our regular GP. You can do a lot of things in regards to eating, exercise etc to keep your kidneys from deteriorating further. Now is the time to act rather than later.

[Cathy12156dsrjad in reply to lowraind]

Thank u and God Bless🙏🏻

[Cathy12156dsrjad]

I hate to keep at this but u guys are so helpful and there is no-one else I want to ask or to bother family with complaints. I guess that means I am complaining to u...ha! Have to laugh😢. I have been trying to loose weight. Been following kidney diet and nutritionist (she helps a little) but up to me so I follow "my fitness pal" and record all and follow protein, carbs, fat, potassium, etc. 1400 calories is what she told me to eat and in a month I should loose a pound or two because so important to stay healthy. My problem is I am insulin dependent and it takes all I got to stay away from at least a little sweet something daily but do not go over allowed but once per week (my treat) for a few Teddy grahams. Whoopi 😢. Why am I gaining weight. Two pounds in 3 days then was nauseated a day and back down 2 pounds. Today back up. What the world. I KNOW I don’t sleep walk to the frig. At least all the food is still there in the morning ha! Please know I am joking. Trying to make u smile as I write this boring request for HELP!! I know this sounds like nothung but I weigh 188 and need to loose to 170 drs. say so any suggestions? I exercise when I can walk but because of chronic depression (had since 24) but God has gotten me thru so no complaints, and thyroid (hypothyroidism) but on low dose of synthyroid), and unknown cause of muscle weakness some days I just can’t do it. Trying to work up to 30 minutes and on and on. I so appreciate u all. And again u r all in my prayers🙏🏻🌈🌈

[lowraind in reply to Cathy12156dsrjad]

I have used Create Your Own Kidney Diet Plan: Build a Meal Plan for Stage 3-4 Renal Disease by Mathea Ford to create my own plan. It gave me a calculation of: SodiumPotassiumPhosphorusProteinCarbsCalories that I could eat daily and how this was divided between three meals, three meals and one snack, or three meals and two snacks.

For almost two months, I tracked the Date, Meal, and Food Eaten at each meal and the amounts of sodium, potassium, phosphorous, protein, carbs and calories eaten at each meal and for the day. This gave me a pretty good feeling for what I was eating and what I needed to do to keep things under control.

Doing this enabled me to go from a GFR of 36.6 in November to a GFR of 54 at the end of February. I am not presently using the tracking religiously although, I do keep close tabs on what I eat. I have lost a little over 10 lbs. I am due to go back to the nephrologist in July and I will be able to determine if I am on track or not.

Also, have you had your thyroid levels retested? I had some of the same problems you have with exhaustion and after checking, my dosage had to be changed.

Finally, to give you the whole picture, I started my search by finding as much as I was able to about ckd. Before I used the Create Your Own Diet Plan book, I used Living with Chronic Kidney Disease--Pre-Dialysis: Secrets to Make It Easier for You to Manage, also by Matea Ford. Although I am not diabetic, she does deal with diabetes, since it is a main contributor to ckd. She does try to sell her products, but I decide what I think will help me.

Hope this helps,

lowraind

[orangecity41 NKF Ambassador in reply to lowraind]

I have read that book by Mathea Ford and is a great help. She has others too. I am 77 and follow the renal diet, and do Silver Sneakers (available at Y's and free to many Medicare plans). In between I walk for exercise. Thanks for the good information lowraind. We all support one another in this journey.

[Bassetmommer NKF Ambassador in reply to Cathy12156dsrjad]

I soooo understand what you are going through. I too am insulin dependent. Insulin is a growth hormone and in fact will make you can weight. Your weight will fluctuate with what you eat and consume daily. Don't let it get to you. It is a tough battle, I know. Stick to logging in your food. I also use Fitness Pal. Stay off the scale accept maybe twice a week so you don't get discouraged. I also have mobility issues and so exercise is tough and hard on me. I try to do something physical everyday. You do not have to do 30 minutes of intense exercise. Try smaller groups of it. Like walk in the am for ten minutes and the again at night for twenty. Walking after you eat or doing something will also help with the diabetes.

I also suggest that you have your thyroid medication reevaluated.

As far a treats, this is my thoughts. This is a life long battle. To deny ourselves all the time is not a good way to live and also... the more you can't have something, the more you want it. Try finding sweet things that stay within your diet. Make sure you include your choices in your planing. My husband (also diabetic) have found things like sugar free jello with Redi Whip or lo sugar popsicles work. I do not like to eat a lot of chemicals so I watch out for them as they are often added in lo calorie foods. Twice a month I have a free day where I allow myself a treat and I don't worry about it. My choice is soft serve ice cream.

The more I stay away from sugar, the less I want it is seems. I have only been doing this for over a month and already, my sugar craving has gone way down, even to the point where I don't miss it. I have lost over 11 pounds so far.

[Sdtagoo]

I had weight loss as a result of taking 2,000mgs of Metformin for my insulin resistance/metabolic disorder. I lost 35 lbs in two years 2012-2014, & have kept it off. It is a side effect of Metformin. It makes your appetite decrease to a healthier level. I now follow my kidney diet & have no problems losing weight. I only eat when I am hungry, with kidney healthy choices.

[Bassetmommer NKF Ambassador in reply to Sdtagoo]

Just to let you know you Metformin is not a kidney protective medication and can be harmful. I would caution anyone with kidney disease to talk to their doctor about all drugs but especially Metformin.

[Sdtagoo in reply to Bassetmommer]

I've spoken with my nephrologist and the Metformin is necessary for my other health problems. I've been taking it since 2012 and my kidneys are functioning steadily at eGFR of 30 from the time I was diagnosed