going on 5 years and still no diagnosis

[shellspicasso]

Can anyone advise me what to do, I've seen several doctors and had a stack of tests, all they have found is osteoporosis (I'm young), tonnes of kidney stones, blood,protein and white cells almost continuously in my urine, hi cortisol, non specific signs of inflammation, low BP and skipped beats. I'm on one round of antibiotic after another but still sick, still no diagnosis, I'm so sick I had to quit working and am in pain all day every day and it's not responding to treatment, if drs cant tell me what;s wrong what do I do? I've done all I can to be healthy and tried all the quack treatments, who can live like this. I need answers or at the very least a way to manage the pain, the pain clinic was useless.

[jemma116]

Sorry to hear of all these problems that you have.

Never mind about thinking about one week to the next, take each day at a time and pace yourself within that day.  Do not struggle through when you feel exhausted, but lie down on your bed and do some relaxation and breathing techniques.

Unfortunately it appears that there is no magic wand for you to get completely well (I know how that is) and you have to take things easy, do strengthening gentle exercises (probably your pain management gave you the appropriate ones) and do things slowly so that you do not exhaust yourself too much all in one go.

With the compound fracture, is this something that will heal in time?
It is unusual for the pain clinic to have taken you off all your meds, the one I went to, encouraged me to take pain relief.  Sometimes the different meds can cause kidney problems as well as constipation.

Have you tried aromatherapy and reflexology, gentle exercise in the swimming pool (indoor heated) or acupuncture?  I have never had acupuncture myself, but it does help some people so that your brain does not get the pain messages.  Don't know if that is something that you can get through your doctor's practise.

Best wishes.

[shellspicasso]

Thanks for the reply, I'm still waiting to go back to the urologist, I've been back and forth to them for 30 years since I was diagnosed with medullary sponge kidney at 12, diathizide dissolves my kind of stones but I can't take it since it crashes my BP, I was actually on florinef for a while because of it. I've had chronic utis and bladder infections for the past 5 years. Fevers, nausea and rigors are pretty much a weekly thing now, for a while I was having occult infections with no fever or symptoms, it would just show up in my urinalysis or hit me fast when it got to my bladder, I had a neuro episode I imagine was from that too, I'm still doing physio for it and my balance didn't come back.

Cardiologist did tests and said he thinks the cause is systemic not originating from the heart so can't do much so back to the endocrinologist. Pain clinic took me off everything and tried to bully me into a trial, they weren't interested in treating my pain just in proving the theory they were being funded for, I ended up going over a pain regimen with my GP and a physio instead, consequently I've missed out on hydrotherapy, a proper opiate protocol and a back surgery assessment I was told they provide (I have a compound fracture in a vertebra thanks to the osteoporosis).

I'm just so fed up with the whole thing you know, so many doctors and tests and they still can't tell me what's causing this, they can't even get me stable enough to work at least part time, I don't know how bad I'll be from one week to the next so there is no way to get a baseline from which to pace myself. My GP has been great but so many are dismissive and insulting. The worst is the exhaustion and the pain, it's right through every bone in my body, like I'm being crushed. I'm seriously starting to think doctors might not be the answer.

[jemma116]

Sorry to hear that you are so unwell.  Unfortunately, a lot of people do suffer from chronic pain and illness all the time and all they can do is pace their day and do what they can.

I am not surprised that you are so ill if you have tonnes of kidney stones.  If you have not been under the care of a urologist, then you should be.  I do not know in which country you live, but in the UK you have to be referred by the doctor to the urologist.

If you have been on a lot of antibiotics, it is highly likely that you may have got a yeast infection.  With the blood, protein and white cells this will be due to urinary tract infections caused by your stones moving.

If you have not already been told to do so, with kidney stone problems, you must drink plenty of water throughout the day.  2-3 litres is usually advised, but you should follow the advice of your urologist if you are in his care.  There are 4 different types of kidney stones and it would have been useful if you had one of your stones analysed to see what it is made of.

Cystine stones are hereditary.  

You should avoiding getting dehydrated because this can lead to stone formation.  Depending on which type of stones you have, you may also need to cut out certain foods which are peanuts and other foods.

Drinking water with fresh lemon juice is said to dissolve stones - obviously that will depend on what type of stones you have.  I have drank this and do not know if it works or not, but I have passed a lot of sediment from time to time which could have been a stone being broken up.  I have heard that parsley is supposed to help too.

There is forum on kidney stones and that may help you to look at that.

With your heart problem, you should be referred under the care of a cardiologist.

Unfortunately pain clinics do not have a magic wand to make the pain go away, but you should have gained some knowledge on how to manage your day.   I feel that with your kidney stone and heart problem, this should be investigated further.

No doubt you on medication for your osteoporosis - this would be calcium tablets and Vitamin D.  Vit D is required by the body to help absorb the calcium.  Eating and drinking dairy produce is a good way to get your calcium.

Best wishes.