Sick of being sick in Seattle

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Look here, I'm sick and tired of Multiple Sclerosis NOT being mentioned as the cause of CKD because it IS for me. My scratching is mainly in the evening and drives me mad. It's confusing because MS causes terrible itching (from the whacked out nerves) and so does CKD. I'm also getting alot of bruising from unknown cause especially on my tummy back arms and legs. I've even had several bruises on my back right where my kidney is.

Also the last 3 years I've been getting very nauseous, even last night after eating very little thanksgiving meal...needless to say it's getting real old being sick SO when it comes to the time I'd need dialysis I WON'T because since age 17 I've been a sick individual so I'm ready to say good riddance to this chaotic demented planet. In conclusion my right kidney hurts all the time, just different degrees but with the stupid MS I can't use a heating pad anymore for the pain because of the terrible heat sensitivity , even in winter . Another words life sucks here, especially now. smile

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  • Posted

    Forgot to mention the bruising could very likely be Leukemia...
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    • Posted

      It stinks. Some illnesses, we bring on ourselves; others, are just a crummy hand of cards we're dealt.  I don't want to make light of your situation. What may help is finding new doctors; some are just so doom and gloom, some don't listen to your symptoms, and some blame those symptoms/side effects  on causes that they think are not in their area of expertise. I thought every ache and pain and symptom my mom felt was from ckd, but much of it was an underactive thyroid.  It may help to join a support group, because like this forum, hearing tips from others may inspire you or motivate you to try something new.  Until then, try to a purpose for each day. It can be that you made someone smile, or you called a friend who could use a pep talk. Anything to feel like your day had meaning.... and quite possibly, you may  feel less helpless and a tiny bit more hopeful. 

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    • Posted

      Thanks yes true...my life isn't doom and gloom in fact I have it pretty good but am bi polar which really is a hard thing to live with....when I got handed MS many years ago it gave me every symptom and secondary illness over the yrs lol. My moods suck indeed...

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  • Posted

    Hi Rachel,

    I'm really sorry to hear that you feel so unwell. Are you able to use a TENS machine for the pain? Some people seem to have been helped by it and the UK NHS recommends it for pain relief.  It seems that you have quite a few symptoms that would merit investigation- the nausea and the itching in particular. Surely your GP would be able to help you alleviate these symptoms. Is there a pain clinic in your area?

    Of course, there are many causes of CKD and many people with it for whom no cause can be found (me included).  You don't mention what your GFR is currently.

    I also get bruisung, which can be a sign of anaemia and that CAN be treated.

    Please don't lose heart as there are many people out there who can help.

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  • Posted

    Yep Rachael. It's called life. Do you think you have a monopoly on feeling sh*t constantly. Welcome to my world. What you decide to do is your choice, but me, I want the pain, sickness and depression to end so that I can be the person I was before I became unwell. I hope you come through this.

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  • Posted

    Sorry about your situation and I never knew that MS was a result of ckd.

    My cdk is based on a inherited disorder called FSGS which is focal segmental glomerosclerosis and a condition called minomal change. I am the only one in my family that has this disease. I don't know if it is connected to my having 47 chromosomes, because one of the attributes is diabetes. Plus you think you have a bad life. Well, could you survive having to go to dialysis three times a week and sit in a chair for 4 hours. That what I have to do to live a somewhat normal life. I am also a double amputee due to my diabetes. I have no foot on my left leg and no toes on my right leg. I have to take both prosthesics off during dialysis because they hurt when I walk on them or sit for 4 hours. I have venous statis which means my capillaries collapse and bleed through my legs and I develope black spots or maroon colored legs. Wearing prosthetic devices ate a pain to walk on for more than 2 hours.

    I don't complain to anyone because they are my only form of transportation. At home, I use a wheelchair because then I don't have to experience walking pain.

    Every person has a different ways to cope with pain. I just hope someone can help you cope with your ckd.

    I am not a doctor and I don't know how to help you. But I am alive and 3 weeks ago, I found out that I will never get a kidney transplant because I have a circulation problem.

    I hope you don't give up on life.

    I could have --when the doctor first cut off my foot and then leg. Or to experience 4 amputations in 2014 and gone on dialysis that same year and having atrial fibrillation in 2014. I don't know how long I will live, but dialysis saved my life. I am 65 years old and ckd has affected my life when I was first diagnosed in 1985. Back then, the doctors didn't know how to treat me for my ckd, but science has advanced.

    So please don't take my words as a criticism about your medical issues. I live in Denver, Colorado.

    Like I stated before, please don't give up on life

    L

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    • Posted

      That's terrible so sorry...if that were me I would've axed myself for sure. Life , to me , isn't worth living if one is trapped in a living hell on a sick terrible planet ...I have family and a comfortable "life" but I do want me back. I've never like being on this planet since being a tiny tot

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  • Posted

    Hi Rachel,

    I am so sad to hear you want to give up on life, I suppose as this is something I would never do (I have too much to live for) but I also understand that we are all different.  You don't mention what stage CKD you are at or you GFR or more importantly your creatinine levels (creatinine is more accurate that a GFR). I have had CKD all my life due to Alports which is inherrited but seems to have skipped a few generations in my family until me (my brother got diabeties bless him).  I also understand about your MS as a good friend of mine has this condition and it breaks my heart to see him in pain but he is soooo brave I am proud of him.  So there are things that can be done to help you regarding your CKD depending on where you are at.  You mention your kidney hurts, CKD doesn't usually cause pain unless you have an infection, so get that checked out asap as if you have an infection it needs treating as this will make your CKD worse.  Your itching is an odd one and may as you say be down to your MS as itching with CKD is usually caused by high phosphate levels in the blood but the itching is constant not just at night.  I would get your phosphate levels checked as this is easily treated with phosphate binders you have before each meal. You can also get your iron and HB levels checked which is advisable, as Lyn says brusing can be caused by low iron and a simple check can tell you if you need extra iron and is is common for CKD patients to have low iron.  I would get your vit d and calcium levels checked as these are some other things that can go low and boy do they make you feel crap.  Why do you say you may have leukemia?  I feel you are tired of feeling unwell I get that been there done that got the t shirt, but you seem to be in a rut and it is making you sad which I also get.  Have you no family or friends that can offer support? There are loads of wonderful people on here that have lots of different experience and stories of insperation to tell, just look at John, look at what he is going though.  You see there are lots of people in the same situation as you who can help.  It makes me sad that you would want to give up.  My GFR was stable since childhood but in 2014 when I was 37 it took a rapid nose dive even taking the medical staff by surprise, I had my tenckhoff catheter fitted in Nov 2014 and started dialysis, I have a husband and two children one was 4 at the time and one was 16, the 4 year old was fine as didn't really get was was going on but the 16 year old struggled and wouldn't even look at the dialysis machine (I did it at home myself) she also wanted to give me her kidney as was gutted when I wouldn't let her, who would do that to their child not me.  I was on the doner list for nearly two years even though I had a live doner, dialysis was ok cos I did it myself I was able to still go to work, so i worked full time with 6% kidney function looking like death (much to the sadness of my work friends) but it was important to me to show my kids you don't just give up and you don't skive off work you carry on (this is just how I was brought up) my work friends and my best friend al got tested I was so touched by how many people went to the hospital and in September this year I had my new kidney and it hasn't been plain sailing but I am getting there and I will never give up.  I have so much that I need to do and I am not going anywhere.  I have been very lucky, I have the most amazing husband that hasn't left my side for weeks, two cool kids, a lovely family and the most amzing group of friends anyone could wish for why would i give up on all that.  Like John says concentrate on getting through one day at a time don't be worrying about dialysis that could be years off and fill your day with a hobby so you have something to focus on and keep your mind on things other than the pain.  Good luck

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    • Posted

      I see your point and you are.strong...I just am not from this warring planet. I have a great family who care but when someone is ready to move on from this place it's a personal choice and nobody should feel "sad" it's just the way I am...As for the bun and creatinine I haven't been to a doctor other than a Naturopath in years so I don't know what stage I'm in....everyone dies it's just leaving this dense physical body and as I said...since I've been a very small child I felt like I don't belong here....it's to damn dense and such a low vibration.

      I don't trust any Dr...the $$ is the most important thing to them , not the patient. Like I said everyone is different so please don't be sad, you don't even know me lol. smile

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    • Posted

      My sister struggles with mental illness, and has for 30 years. She has other medical issues, including cancer (which now looks like she may actually beat). Many days, she feels like you have described. But, every now and then, as short-lived as they are , she feels moments of joy. Those moments are what we hope to hang onto, but they don't last as long as we'd like. I hope one day, science will catch up to her brain, but until it does, I would like to think that those moments of joy give her enough reason to get through the other days. Life can really stink, and it stinks more for some than others, but if you allow yourself to relish the days that it doesn't, you can find purpose in yours.  It has not been a picnic for her family, either, but I know my life is better because she has chosen to stick through the bad so we can celebrate the good, together. I also know that from November till January, it is especially hard. So try to get through the season, and if you can, plan a post-holiday mini holiday for yourself. Meanwhile, try to reconsider a doctor who has more loyalty to the field than money. They may be in the minority, but they are out there. My son aspires to be one of those. He has a good heart, and I know he will be in it for all the right reasons. 

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