Sick and pain. No real answers

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Hello, my name is Tina. I am new here.

In 1995 i started feeling very tired , to the point after work i had to take a nape from 3 to 5 to make it through the rest of the day. I worked 5 to 1 or 6 to 2.

About 1998 i could not breath. Felt like i was suffocating all the time.

In 2000 i was a big mess with no answers.

By 2005 i starting feeling tingling in both feet..

It keep gettig mor intende as time went by.

By 2007 my my calfs aching really bad both legs

By 2009 it had spread to my thighs as well.

Also i have had surgery in 2012 for carpal tunnel both bands which test show i still have . tested in 2014.

I have been diagnoised with gastopheresis in 2011

In 2010 was diagnoised with H polori and retested after treatment came back neg. Was tested for H polori again in 2014 came back positive treated and restested came back neg.

In 2013 went for sleep study came back that my oxygen was dropping into low 70's while sleeping. Have sleep with oxygen since but honestley i dont sleep much due to pain.

Ok ive started having chronic issues with sinius infection in last 2 years lost of mucus.

My bladder feels full but yet i can not urinate . on other side i dont feel need to urinate and next thing i know is urine rulling down my legs.

Bowel problems have been diagnoised as ibs in 2007. But have not hard stool but it feels as it just lies in my rectom until i strain it out.halve the time i get no erge to poop.wierd right i know..doctors say take stool softner daily. My stool is soft. But do have perids of constipation and times spands of diarrhea as well. Crazy i know but true.

Ok for last year or over a tear. My blood work comes back i am dehydrated. I drink water all day long all night long. How can this be. ???? Crazy again......ok last year my regular doctor told me my blood work looked off sent me to a cancer doctor. He done blood work every month for 6 months and said blood work looks fine now so i dont need to come back.. Ok i was like what is going on?......

Nnow in past 4 months pain in my legs has spread accross my hips. To painful to do anything. Roll over in bed sitting twisting lifting leg and for get wipping my but normal pain is screaming out loud.

Went to er last week due to not sleeping or eating and barley getting aa shower cause of pain in my left hip.

She orrdered a ct scan and says your eat up with arthritis gavve me a referrel to se a neuro surgeon

Ok i s lready knew that and was told its not whats causing my pain

Er doctor says it is that the spurs are rubbing on nerves causing the pain.

First off i went because of hip but pain.. I have 5 masses i feel with my fingers but she scans by back...dah......i have been seeing an endocrenologist last 2 months cause cortisol came back 0.7 at 815 am very low...

Endo has sent me twicw for more bw. First one cortisol 6.6 at 845am acth less than 5. Both low

Second one 730 am cortisol 15.6 normal acth less than 5 very low..Now i go again tuesday for more bw cortisol fsh.and Lh. iGF I ECL Estradiol.

How can cortisol be 0.7. 6.6. 15.6. All am in 4 weeks..but acth always low which tell when to release cortisol....crazy....Its addisons disease or .cushing disease they say.. How... I have symptoms of both... Crazy.. Nothing about me makes since..

My hair is thinning like crazy.dry very itching skin for weeks at a time hands and feet puffy whole body feels bigger sometimes.

Have blurry vision right out of the blue usually doesn't lat long.

Fingers and toes hurt so bad half the time they feel like they will break.I am burning up all the time can not cool off.I feel so ill that i fell like i will die at any moment.

I forgot to mention i have severe indigestion heart burn. With a lot of nausia. Everytime they look ay my stomach i have ulcers..

I never eat fried foods spicy foods ect..

I do drink a couple of mt dew a day but mostly about a gallon of water daily because if i dont i stop urinating...

I have to take b12 injections and liguid form vitamin d all the time as well. Sodium always high i never salt any of my food. Low potassium and could keep going but i have no one to talk to so it helps just typing it to strangers.

Anyone out there with similar problems???

0 likes, 11 replies


11 Replies

  • Posted

    I don't have similar problems tina but are yours related to osteoarthritis? I'm just a bit confused because you've posted here. I have osteoarthritis and can relate to tingling in my hands but not your other symptoms.
    • Posted

      I agree!  This poor lady is in one hell of a mess, but I don't think much of it sounds like OA. 
    • Posted

      Thank you constance. I read tina's post several times and felt she was posting in the wrong forum.
  • Posted

    Hi Tina!

    I'm so sorry to hear about all of your troubles. It must be a very frustrating situation for you!

    Have you had your blood sugar checked? You have many symptoms that my husband exhibits, and he has not-very-well-controlled diabetes (feet tingling, being tired, aching calves, random pain, constipation, itchy skin, blurry vision, pain in fingers, stomach issues and many other symptoms that come and go).

    Unlike you, he REFUSES to see a doctor. He is 64. I told him that when he finally decided to SEE a doctor, it might be too late to fix him. His response? I'd like blue flowers.

    I'm glad you are seeing a doctor. Maybe a different doctor would have answers and a different approach.

    Never give up!

    Sending prayers of strength and patience to you today!💗

    • Posted

      Why is it that men hardly ever go to the doctor?  I forced my husband to go when he told me his blood pressure was 190/55.  He was in hospital within 2 days (heart racing)!  Told him I didn't fancy paying for a funeral!!😀😀

      Blue flowers?  He'll have to 'pop it' in Spring then - not many blue flowers for the rest of the year.

    • Posted

      I KNOW, I KNOW!!!😲

      My husband just doesn't want to hear what Doc has to say. (Sigh!)

      Glad you were successful in getting YOUR husband to go!

      My plan would have to include duct tape and a straight jacket...😁

  • Posted

    Have you been diagnosed with osteoarthritis? I felt exhausted just reading all that, I can relate to a few of your symptoms, but not all those. What medications do you takeaway?


  • Posted

    Hi Tina,

    ​I too read your email several times. I think it sounds like you have either addisons's disease or Cushings or both. The first is where the adrenal galnds attached to the kidneys are misfunctioning. This would relate to your urinary issues and cortisol issues. Cushings is where the pituitary gland is misfunctioning.   I think they have taken a long time to diagnose you and it is a bit out of control and they need to get you to a stable state on these, which is probably what they are now trying to do. I think it has taken a long time to diagnose you as both are rare. Both are on a national database as they are rare and if you ask your consultant to pop you in touch with the right people, you shoudl be able to find others with either disesase.

    ​Itches often go with kidney issues.  So whilst it sounds like everything is wrong then i think they are getting to what appears to now be the core issue  i.e. Addisons or Cushings. Book an appointment with your GP and say you are very worried and need help here and ask him to find out how you can be helped and to find others in your area you can talk to.   Nte your GP wont have seen many, if any, people with either disease so ask him kindly to help you. I am sure he will.  These are serious diseases if left untreated so get treatment ASAP.  There are new drugs now for these issues.   If you google Addisons Disease and Cushings Syndrome you will find out more. IT will seem scary but just be determined to now get the right treatment and drugs - nearly all the symptoms you describe are related to these. I think they have taken a long time to diagnose but you are now at last on the right track. I think this is the case as they are regularly taking your cortisol and trying to stabilise it (linked to the adrenal glands).   The first port of call if to trust the renal guys and make sure you are absolutely adhering to the treatment plan to stabilise your situation. You feel so up and down and werid as it was not controlled. Hopefully they can now get under control for you.   Take heart they now seem to have diagnosed you - rare so this is why it may have taken a while.

    ​Try and find a forum for Addisons and you will find people with same symptoms.   Take some heart as lots of advances have been and are being made for the treatment of these diseases - notaby in last 5 years.   You will need ongoing care and medication so make sure the hospital consultant is giving you lots of information. There will also be hep available to you in the renal departments - they will have a support group for you.   Good luck and wish you the best. 

    • Posted

      Hallo Sparkle.

      Great, I think you may have come up with the right diagnosis.

      There is someone who has Addisons on the PMR forum.  Unfortunately I can't remember her name (it was quite some time ago).  I just remember  telling her that my son's dog has Addisons.😏


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