Tuesday, September 15, 2009 Salinger, Community Member, asks

Q: I have RA, degenerative disk disease,scleroderma

This started when I was 28 years old & delivering the single biological child I would ever be able to have. The labor started  normally however it was a disaster from a toxic amount of anaesthesia. I had been in labor far too long & should have had a section; my Dr. went to a holiday party "because you aren't going anywhere for a few hours" & said I'll be back;  orders were the nurses to keep up with the anesthesia. This was wrong for so many reasons & a few hours later a nurse found me with a pulse of 38 over 20.  The baby was lost off the monitor for more than 10 minutes & not even my husband told me until decades later. I had more medication than was reasonable & has been since explained to me that it is the most likely cause  for an apoplexy at the pituitary that destroyed the majority of the gland. I paid for that night the rest of my life. I have had chronic pain for decades & wonder how or if this is related to living my adult life with hypopituitarism. Everyone was quiet at the hospital, so I didn't know why I was sick with severe headaches, why my under the arm hair fell out & why I had no milk to nurse the baby. I had no ocytocin & the obstetrician & the pediatrician knew this but no one was going to risk being honest with me! 

The years passed, I did not get pregnant with no prevention attempted.  My daughter had learning disabilities, slow development; I started trying to figure out what plague had set upon my house. I was peri-menopausal;  saw an endocrinologist. changing my life forever. My daughter was oxygen depleted at birth. With menopause & the bit of estrogen coverage I had was gone, the chronic pain started. We got my daughter an excellent doctor & now we understood the possible reasons for delayed development, immaturity, & inability to focus. She has PCOS (I did when I was younger) & it has taken her 9 years to get to her senior year in college, but she has suffered. She is thinking that her problems resulted from the delivery fiasco, thinks hereditary has determined what happened to me will happen to her. This is about Sheehan's Syndrome, right? Is there a heredity relationship & is she at a greater risk of delivery complictions? Her fear is of having a child that will experience what she did; the "slow" cousin in a family of over achievers was very hard on her. Thanks for your attention and patience. Is there an answer that would make sense?  My doctors are so alow at trying anything beyond lyrica & fentanyl & my pain is driving me crazy. It takes me hours to get up in the morning. My spouse thinks I have a character flaw & am lazy. I stay in the marriage I am being bullied in because without my insurance (that is $1200.00 month) I'd be dead from pain. I worked until I was fainting from exhaustion & had to quit. I also take Human growth hormone which I don't think I could give up without horrific pain. Is there nothing better than fentanyl? I'm simply a medical addict now & very depressed about that. I have changed to a strict diet & it seems to have affected nothing. How often should I expect flares?

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Answers (3)
Lene Andersen, Health Guide
9/21/09 11:56am

You sure have been through the wringer - I'm so sorry to hear about your problems.  Please know that you are not lazy when you're in pain - it sounds like you already know this, but it can be really hard to receive that message every day.  have you ever had a referral to a pain clinic? They specialize in a multidisciplinary approach to dealing with pain and that may give you some options.


Unfortunately, I don't have a lot of answers for you. None of the people who answer questions in this section are doctors and you have a very complicated situation that I simply don't have the expertise to address. I'm so sorry and I hope that you can find a doctor who will be able to give you the information you need.

Marilyn, Community Member
9/26/09 11:19pm

Hi Salinger,

I'm so sorry to hear of your situation. I also have a son who was born with slight learning delays and is considered what they call as "slow". He also suffered from lack of oxygen at birth. I was very encouraged that your daughter has graduated college, how very proud you must be of her. I am struggling to find out answers for my son, who is now out of school but trying to find his place in the work force and never considered him college material. Was there a diagnose for your daughter and what did you do to help her with her learning disabilities? I hope you don't mind my asking I realise this is a blog for RA which I was just recently diagnosed as having.

Thank you for any insight you might have and hope this comment finds you well.


amy, Community Member
9/ 9/11 11:05pm

I was reading about tetracycline, an antibiotic used to fight scleroderma and the bacteria that causes it.  Look it up.  Dr. Brownn's theory and the book:



Hope you get better.  Scleroderma is very dangerous if not treated propoerly

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By Salinger, Community Member— Last Modified: 09/09/11, First Published: 09/15/09