Ckd and anxiety attacks

Hi everyone - recently discovered I had ckd by looking at dr notes - he never mentioned it! I have had health anxiety issues since I was 40 - now 65. Was on Paxil for 6 years and many years on lowest dose of Effexor. I recently weaned myself off of Effexor about 2 months before knowing about ckd. This morning I had a major panic attack regarding ckd. It was terrible! I feel like I need to go back on meds but don't want to due to kidneys. I find the diet and uncertainty of this extremely overwhelming and I'm not dealing well. I looked back through my labs and found that when I was 58 yrs old my lab stated "normal" with a creatinine of 1.0. 5 years went by before I saw dr again. These are the results for creatinine and gfr since: 1.23 (47), 1.14 (50), 1.02 (58) and 1.13 (50). I had a normal kidney ultrasound. Do others have enormous anxiety or panic attacks with ckd? I feel so hopeless, terrified and overwhelmed- I know I need to get a grip on this but don't know what to do...talking to a therapist never really helped me much. Thanks for your advice

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  • Hi lin14534 - I have CKD Stage 3a diagnosed 6 years ago, I am 69. I have suffered with anxiety for many years but more so since the diagnosis of CKD. I have suffered with it daily but have also learned to keep it under control. I was on citalopram for 2 years but gp said I had to wean myself off. I take nothing for anxiety now. I think that with CKD it's having a disease that can change quite rapidly from blood test to blood test. It's a case of the unknown and a silent disease which can be quite frightening, if we let it. I live my life from day to day, exercising, eating as healthy a kidney diet as possible and drinking lots of water. My egfr has risen from 42 to 61 over these years. I practice yoga which helps a lot. Try to relax and enjoy each day, take care and good luck 😀

  • Thanks for your reply. I find it so darn hard not to be anxiety ridden over this. My husband apparently doesn't get it and thinks I should just carry on and get off the internet!! Has your dr sent you to a nephrologist? Dietitian? Where did you get your info on what to eat? It's so hard being off the anxiety meds. I feel like I haven't slept in a long time. I need something to help me sleep through the night as I wake up early in panic mode.

  • I understand completely about the anxiety level being a day to day issue. I had to stop seeing my first nephrologist and am awaiting my first one with a different doctor closer to where I live. I have a better handle on it now but each day is a worry.

    I made up my own cookbook pulling recipes from the DaVita website. Those work best for me because I also have diabetes, even though I have it under control now without medication, just diet and exercise. The website gives you basic information and salt, potassium, phosphorous, calcium and calories. The recipes are marked as suitable for CKD with or without dialysis and diabetes.

    A new PCP also has been a big help. I also went online and and found a renal dietician and have already spoken to her and when I get back home next week I will schedule an appointment with her.

    Don't get too frustrated and keep in touch with everyone here.

  • Thanks Mr Kidney...if I could just get some relief from this never ending anxiety I might deal with this a little better. Just afraid to take any meds for it. Also I need some uninterrupted sleep - maybe Tylenol PM before bed?

  • An over the counter bottle of Melatonin may help, I think the dosage amt. is 10 mg. If that doesn't work try a shot of cognac about 5 min before bed. Seriously, try not to think about it for the hour before you plan to go to bed and do something else to keep your mind off CKD. Those things worked for me so I'm happy to pass them along.

  • Mr Kidney - if you don't mind me asking, what age are you, when did you find out about your ckd and what were your creatinine #'S running? I read a comment from a dr Tom Smith online that said "try not to stress about ckd - in my practice I might see 1 person out of 100 with ckd progress to dialysis". Do you think that's true?

  • Hopefully this is not a repeat message. I tried sending it once before but it didn't go through.

    I recently celebrated the 27th anniversary of my 39th birthday. I had to go back to my previous nephrologists records to find my lab results and saw that I was at Stage 2 for 1 year without being told. As of my labs done in early June I'm at Stage 3A,

    Over the last 17 months I've been on a diet and lost 130 pounds. Actually, 310 pounds if you count my getting rid of the previous nephrologist for a new one. I'm waiting for an appointment with the dr. closer to where I live.

    I didn't read the quote you mentioned but from a lay opinion it makes sense. Stressing out can be a bad thing for anyone's health. Once you learn to make peace with it, it does get easier.

    I've read everything I can so far on dialysis but I also compartmentalized it so that until it becomes necessary I don't know which method will be best for me.

  • I'm 65...congrats on the weight loss!! That's amazing! Over the last 1 1/2 yrs I've lost 65 lbs which gave me an A1C of 5.4, lower cholesterol (no statins now) and bp of 107/60. Maybe I'm being nieve but I've read from nephrologists online that if you're currently in stage 3 the probability of going to dialysis is small considering the 30 million that currently have ckd. I'm not a very good cook so I need to have things to make that are easy peasy. I also am going to contact my dr about his opinion regarding the antidepressant. It has to be worse for my body going through this panic than the medication itself. I'm a real people person and love my friends, I wish I knew someone I could talk to and commiserate with in person. I'm also going to start taking 2 tsp of apple cider vinegar in my water. Thanks for responding to my questions - I appreciate the feedback!!

  • Mr kidney, so happy for you that you've taken control of your weight and your GFR has risen so much! It's great to hear that nutrition and exercise can make a difference!

  • I think Dr. Tom Smith might be on to something. I have stage III CKD, but I am many years away from the need for Dialysis.

    I think if I were you, I'd find something new to research on the internet. If you don't, you won't never get a handle on your anxiety. You will just let your mind run away with you. There are Many, Many people that live just fine with CKD and it can stay at Stage III for many years. Then stage IV can last many years...stage V is when you would need dialysis---that could be so far away from now....you need to just live in the "Now" and in the " Moment" ---you will be glad you did.

  • Just curious - is this what your Dr told you? Just from reading others responses it seems that it's 50/50. Trust me, I know that you're absolutely right! I've been researching so much that I've developed severe panic/anxiety attacks and insomnia. I'm going to stay off google! Thanks for your comments.

  • Hi Lin, I'm not sure where you live? I'm in the US and we have doctor's, specialist, teaching specialist, state of the art hospitals....I get the feeling that these people on this site that see GP's and Chemist and they want to treat lung infections with steroids and anti-inflammatory medications just seem as substandard care to me. For people with kidney disease or kidney damage they really should see a Nephrologist. Now, my doctor and my home health nurse both told me to quit looking up things on the internet. That lots of time, it was wrong information. Therefore, I have used my experiences along with others and their comments, because they have already been down that road. Their experiences are real and honest. Not from a website. Now there is another really good website that could probably benefit you. inspire.com a great site, such as this one. One other mention is for your anxiety. Deep breaths through your nose and blow out through your mouth. (smell the flowers, blow out the candle.) Hope I've helped you some!

  • As Mr Kidney said, you might try Melatonin. You can get it in as low of doses as 1mg. It was suggested to me by my holistic doctor that I start out with 1mg then work my way up to a good night sleep. Take 30-60 minutes before bedtime. I believe you can take as high as 20 mg, once you get to the point where you are a little groggy in the morning, back it off a mg. They are sold in 1, 3, 5, 10 mg doses and are pretty inexpensive.

    Here are some free ideas

    Also, try meditation music at night. Here's a linkhttps://m.youtube.com/results?q=sleep%20music&sm=3

    Sometimes I listen to anxiety hypnosis. This guy is fabulous.

    And yoga by Adriane

    Sweet dreams and many blessings being sent your way!

  • Hi there - I did see a nephrologist 5 years ago but that was to confirm both my kidneys are scarred. I haven't been back as I have to pay. The NHS won't let me see one until I'm at Stage 4 which could be too late. He just told me to eat a healthy diet. I went on the internet and found a nice lady renal dietician whom I have been in touch with ever since. Her name is Mathea Ford and she lives in Oklahoma. I have bought her recipe books from Amazon and cook all my meals from scratch. Fresh fruit and vegetables and I exercise regularly every day, walking, swimming, yoga and occasional visits to the gym. I have been stable ever since and as I said previously my egfr has risen from 42 to 61. Keeping positive and determined to control this horrible disease in the best way you can will keep you going and hopefully help you through your anxiety. Never give up. You control it and don't let is control you. You'll be fine, take care and good luck, Sukki

  • Wow...you're active which is great!! I was wondering if walking and yoga would help with my anxiety! I'm interested in knowing how the nephrologist could tell that both your kidneys were scarred? Do your egfr numbers go up and down or do they stay around 61? I would really like to find out what my actual gfr # is and not the estimated one from the standard formula that is used for everyone.

  • I to have ckd stage 3 gp won't ref me either told to take less anti inflammatory tabs reading were 44 it's all to cut costs feel I need more help from gp but she doesn't care

  • Lin14534, Dr. has been watching for several years. My gfr was 70, stayed 70 for several years and began dropping last year. It is down to 18, creatinine is 1.4. I do have a lot of anxiety and depression. I also have a spouse who is suffering from 4th. Stage COPD. More stress! I pray a lot and cry a lot. I am so exhausted every day, dizziness, itching,metal taste in my mouth. I know I have to find peace &acceptance . I think all us who have CKD share a lot of the same feelings. God bless you.

  • Walking and yoga will definitely help, the more active you are the less your anxiety will affect you and most forms of exercise is healthy for your kidneys and you'll have less time to think about it too. Try to keep a positive attitude towards it, don't let it rule your life. The nephrologist could see from my X-rays that both kidneys were scarred. I have no idea how my kidneys were damaged. No members of my family had CKD. Since following Mathea Ford's kidney diet my egfr has varied from 51 to 61 but you do need to drink at least 1-2 litres of water per day as well. Hope this is helpful to you

  • The thing with me & exercise, I have 5 protruding disks and spinal stenosis. My hubby is now in the ICU unit in the hospital with his copd and Afib. I can't be there because of all my problems. I'm at home alone, just thinking & praying. I drink my water but my diet is not too good now.

  • Hi lin 1435

    It is easy to say not to get anxious. I am 68 with 1 kidney, creatine 136 and have had ckd for 10 years. Ask your GP for an appt with a Nephrologist, who will put yoir mind at rest, also get a nutrional dietician.

    It is manageble, eat healthy and drink loads of water. Love yourself. Xx

  • Hello lin

    Being stress out,,,makes things,,worst,,,I should,know,,what I'm going thru right is a rollercoaster,,,the last 7 weeks I've be a nervous wreck,,I had ptsd from an incident 6yrs ago,,,recovered fairly well from that but now some of the symtoms coming back,,,,our minds are fragile, it's hard not to worry ,and get a panic attack when that's what a person does ,it's sometimes uncontrollable, but acceptances of what the worst case scenario may be, will help calm down your anxiety attacks...my gfr has gone from 40,,,,36,,,back up to,65,,,then nose dI've to 21,,,23,,,the last 5 wks , finally got a nephrologist and saw him 2 days ago,,,I've been on a starvation diet and lost 26 lb in 2 months time, so he thinks it's dehydration and starvation for the kidneys and had me eat three Square meals a day for the next 3 days, and on the fourth day we get another blood tests and I'll see him on the following Monday to see where I stand, I hope he's right, could not understand why my GFR levels went from stage 3B to late stage 2 ,which was where I was last year,,,,my pcp never told me I had ckd....1st found out 7 wks ago ,,and it went back to stage2 ,2 wks ago,,,,A couple of days ago I went to ER ,had breathing problems last 2-3 weeKS with weakness upon doing simple task. dizziness, ,,blood test was stage 4,,, 2 differ blood test,,,,pcp sent me out same day to comfirm ER 's test,,,,,so now I'm sitting here waiting and eatin to nourish my starved kidneys with food and water, waiting till Saturday to take the blood test and go and see my doctor Monday..to see my outcome,,,,I'M Clinging On to Hope, that my levels go back up, doctor says if my starvation diet is the main reason the blood levels are doing this, then they should come back up,,

  • Hi there. I am awful with my anxiety even after my diagnosis back in 2012. I am 49 now but I tend to suffer the worse anxiety when I have my Neph and bloods appts coming up, and then of course my blood pressure is high, so none of these are doing any favours to my kidneys. I was at stage 3 when I was referred to a nephrologist, unfortunately though mine progressed to stage 4 earlier this year. I am in the UK. My neph have prescribed me additional blood pressure meds which seem to have helped slow my heart rate down, they are beta blockers called Nebivolol, and so far it seems they have helped with my anxiety levels too (somewhat), my next follow up is next month to see how I'm getting on with my tablets, at home the bp readings are not too bad, but its when i go to clinic they are terribly high because of my anxiety lol. I have since mentioned about Acupuncture to my Neph (Professor) and he said no harm in giving it a go but there is no such evidence to state if it helps or not either way, but not to over-do-it, and he said about meditation is good too, google for more info on this with the right soft music to help. x

  • Hi, I, like you, have recently been diagnosed with level 3a CKD. Initially I was very surprised and anxious as I have none of the risk factors associated with the disease and am only 51 so have no idea why this has happened. I spent a few weeks panicking and googling for reasons and help. Since then I've spoken to my Doctor and a renal dietician. My doctor says they see hundreds of people in their practise like me and the only reason it's being picked up is because it's being screened more. A few years ago we would have been blissfully ignorant of this and carried on as normal. The vast majority of people like us won't get anywhere near stage 4/5 and dialysis. Her advice was eat healthily, exercise and don't worry. The renal dietician said exactly the same. I've always eaten healthily and exercise regularly, but I decided to take the doctor's advice and stop googling/worrying about it and it's amazing how much better I feel. I appreciate everyone is different, but I hope you can take is approach too, it certainly helps :-)

  • Hi and thanks for your reply!! Could you tell me what your creatinine and egfr #s are? I understand that these #s will fluctuate. I have a tendency to be on the anxious side and have a hard time being positive. It's reassuring to me that your dr and nutritionist both told you the same thing. My dr just wanted to pass it over and told me to "drink more water". Sounds like you have a good dr. I've lost 65 lbs in the last 1 1/2 years on weight watchers but now with this I became so anxious I hardly eat much. I need to step it up and have better meals. I'm going to make an appointment with a nutritionist also. Did you meet with a kidney nutritionist or a general one?

  • Hi my GFR is 53 and I can't remember the creatinine level, but it was slightly above the acceptable threshold. I would definitely recommend eating well. Eat whole natural foods as much as possible, avoiding processed foods which tend to be high in salt and phosphates. And exercise. I would also recommend seeing a dietician rather than a nutritionist (if you are in the UK). Dieticians have been medically trained and have to be registered whereas anyone can call themselves a nutritionist and, although they can probably give good advice on healthy eating, they may not understand the impact on CKD. Most GPS won't refer you to a dietician if you are stage 3 CKD, but I managed to get a referral because I have many food intolerances and explained that I wanted to be sure my limited diet wasn't affecting my kidneys. You can always go private, if funds allow it. Good luck anyway.

  • Hi Lin.

    I suffer with anxiety,it is always with me.

    I work in a hospital as a Nursing Assistant.I love my job and no patient would ever guess I am slightly bonkers.I am kind and caring and sensible.

    1 am 63 .

    I take medication and when things go well in my life,work,family ,health etc.

    I manage.

    At a check up with my Dr. 3 years ago.I was told my Kidney numbers had

    dropped from 68 to 33.........no idea what he was talking about!

    Soon found out.Major panic, I Rember it well.

    Actually asked to go private as I was in such a state.

    I did get an NHS appt a few months later.

    Gfr 32.

    High B P.( was to blame)

    Scan.( Scarring and shrunk).

    3 month appointments....now 6 monthly.

    I went last month, still high blood pressure, never been under control,

    many different tablets tried.Creatinine was not recorded so no Gfr

    number,got to go back again next month. Not helpful.

    I am normal weight, if anything a bit skinny, I used to exercise, walk, jog and swim.Eat ok, like chocolate. Just walk now..might try swimming again,just got lazy and scared to go!!

    But I am mentally petrified that I will drop a couple of numbers and go to stage 4.

    Honestly.I wish I never knew.

    It is on my mind,definitely anxiety more so ,when a trip to see the Consultant and I think about it afters for ages.Then it's time to go again.

    So if you suffer with chronic anxiety.yes I think any other illnesses would impact on that.

    Talk to someone, stay strong........can always stay in touch.

    We will be ok.

    Love Dawnx

  • Dawnx - thanks for your reply...anxiety is awful. You mentioned you were on medication, is that for your anxiety or blood pressure? I went off my anxiety meds before I found out about gfr and have been trying to stay off but I don't think I can. I'm going to call dr and go back on them.

  • I have taken medication for my Blood Pressure for at least 25 years.

    Many different combinations,if I had a £ every time I was told it's high I would be rich!

    I do take medication for Anxiety and Depression for which I'm extremely grateful.I will never come off completely as I manage well on them,I am able to work and enjoy life. A lot of ups and downs,frustration and tears it's just finding the right balance.

    I would go and see your GP and have a chat as mental wellbeing is as important as Kidney health.I do hope you feel better soon.

    Dawnx

  • Hi lin, If I were you, I would make an appointment with my kidney doctor. I would discuss your concerns with him. ALL of your concerns. I have stage III Chronic kidney disease and had a thorough consult with my Nephrologist-(kidney specialist) we discussed my concerns. I took a list of questions with me so I would not forget to ask about certain issues. I can see how you become all worked up, but you are going to have to lighten up. You might need to call your doctor about your stopping your antidepressant. I always thought you had to be weaned off those meds; not stopping cold turkey. That could explain a lot.....you may be going through withdrawals. I would call my doctors, make an appt. to see them asap and in the meantime, I would try to give up salt and drink more water. Things are not as bad as they seem. Hang in there!

  • Hi, I have only ever had one panic attack so I can understand a little of what you're going through. You figures look OK to me I'm currently at Gfr 22 having dropped from 30 last December, like you my doctor didn't tell me, so it was a big shock. The specialist I have been seeing said Gfr of 60 was fine for our age. How is your blood pressure? Drink lots of water, eat more fruit and go for a 20 minute walk everyday and learn to meditate. Good luck, I wish my figures were as good as yours.

  • I bought her cd on Amazon. She herself has a transplant. This worked for me because I wanted it to...http://www.rsnhope.org/kidneytalk-podcast/show-index/unwanted-habits-feelings-hypnosis-can-be-a-solution/

  • Website is rsnhope.org

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