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Author Topic: A little help, advice please Getting a second opinion  (Read 3275 times)

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Offline guitargal

  • Member
  • Posts: 114
A little help, advice please Getting a second opinion
« on: August 02, 2018, 03:18:45 pm »
Hi people,
I decided to get a second opinion so I have an appointment in 3 weeks at a clinic at a big medical center.
my doc is not hearing me and my concerns.

from what i have read I should not be taking large amounts of Advil or Tylenol for months on end since I have kidney loss for about 7 years now.

I had an ulcer  years ago when taking too much tylenol or ibuprophin because they would not prescribe pain medicine because of the opioid epidemic.

 then i had pain management  and was able to function and no Advil or Tylenol

They took away my pain meds for no reason. I was on a low does and never asked for the script early.
 I am back to over the counter and it doesn't help much anyway.

My last BUN was high at 27 and the BUN/Creat is 24
GFR was a bit better at 55 from a low of 32

I never had these numbers for the BUN before.

I now have high blood pressure and my cholesterol is 243. I was concerned that the Triumeq was causing the high cholestrol and BP issue
He said no. Stay on the Trimeq

I am taking lisinopril for the bP and he added the diuretic hydrochlorathiazide.

I read that taking tylenol and Advil with the diuretic is bad for kidneys.

He said it is fine. That I can take up to 3000 mg of tylenol or 1800 mg of ibuprophin every day.

I don't think anyone should take that much with out finding out why they have so much pain and what else can be done for it.

I am thin and always had low BP.

What do you think?

What a long strange trip it's been

Offline em

  • Member
  • Posts: 662
Re: A little help, advice please Getting a second opinion
« Reply #1 on: August 03, 2018, 12:13:36 am »
I have read and reread your post quite few times

but did not want to leave your post unanswered. I apologize for not being much help 

not being a medical professional it is tough one on what to offer you as advice on dealing with pain

could you have picked a more difficult topic to respond to at this time when everyone is saying how bad pain relief medications are ?

I don't think anyone should take that much with out finding out why they have so much pain and what else can be done for it.

your own advice seems to be very good. I don't feel I could say anything better

something to look forward to   when  the fashion of the day changes from the drugs we have now to something altogether different I cannot see the future.  but can only remain hopeful of being able to deal with it the best I can. some marijuana based pain meds might be in the near future or even out now just not mainstream just yet. something positive to look forward too

I hope you find something to help you deal with the pain you are dealing with

MY BP was always low as well but I have been told it needs improvement my guess is not getting around like I used to and getting old has taken its toll

maybe another LTS might have better advice to offer ?


Offline weasel

  • Member
  • Posts: 1,898
Re: A little help, advice please Getting a second opinion
« Reply #2 on: August 16, 2018, 12:52:47 pm »

     Hello guitargal  :)


      I was warned years ago NEVER to take  Advil or Tylenol EVER !

       They are very hard on the kidneys !

       Yes you need a second opinion . Often I have found my I.D. doctor does not
      really give a crap about me . I have seeked out specialists to fine out why

     i feel awful .

      I also have been deleted from pain pills , in  a way it may be good ? Not sure yet .

                                                          Keep us posted , Carl
" Live and let Live "

Offline guitargal

  • Member
  • Posts: 114
Re: A little help, advice please Getting a second opinion
« Reply #3 on: August 23, 2018, 02:01:50 pm »
the second opinion doctor was very nice. She said to stay on Triumeq. and that the 3000mg a day of tylenol is not good.
 I was concerned about it causing heart problems as I never had high blood pressure and in December it started and am on lisinopril and still my BP is 154/84

1st dr. said the new studies say it is not bad for the hart.
2nd said jury still out.

Woke up crying in pain again, No one will help me.

 i have not been taking tylenol. That was the suggestion from the 1st doc when i told him i don't know what to do or take for the sever pain anymore. I told him years ago i don't take it before i was cured of hep c.

i have been taking advil and a baby aspirn. I keep telling them i do not want to take advil everyday for months on end.

I try not to take it every day and instead cry. Hot bath and ice packs.

i have been waiting 3 months to get into the pain clinic that i went to years ago that said i have fibromyalgia. and the doc at that time said he didn't believe in fibro.

one more month to go and it is a 3 hr drive.
trying to get an appointment sooner. the drive alone will be very hard on me. sux

woke up crying again and called my 1st dr . spoke to the nurse and told her i can't do this anymore. i can't function.
she said to go to the ER.

i have been down this road before and refuse to show up at the ER crying in pain for them to think i am a drug seeker or a weak depressed woman. The second a HIV+ woman goes to the ER for pain symptoms you are dismissed. I am so tired of this after all these years. Some days I feel i can't go on.

I was on pain management after years of suffering. They took it away and I am back to suffering. I can't work or do much at all. loosing weight again because it is hard to eat when in pain and hard to cook shop an clean.

sorry for venting but I am so tired of not being treated for pain because the opiod epidemic. Last year I weaned off the very low hydrocodone, they prescribed me for a few years,  when i knew i would run out of meds and had no problem. no problem with the mental aspect. i took a low dose so i was not stoned and could function . I even had my doc lower my dose because of that! Now they wont give me it anymore.
I have tried everything they wanted me to try in desperation to get well..
They are trying to kill me and make me suffer.
Lyrica causes kidney issues. took that not knowing i had chronic kidney disease with a GFR of 36
lexapro celexa

now they want to try cymbalta again or effexor

I only tries all these as they said it would help the pain.
years of them insisting it would help and am 56 and never took anti depressants in my life.

yes i am upset, not depressed/ i can't do much or earn money. i have plans and things i want to do.  i was fine mentally before the pain thing started and now back to square one with them wanting me me try all these things again.

When i asked what i can do while waiting all these months to go to the pain clinic they want me to go to ortho and maybe get injections. what? how can someone get injections in every joint of their body? i won't get injections again. they tried in my bursitis and only 1 of the 3 times helped. 2x it was painfull as they missed the bursa.
i have known people and read about it who get them in the neck and back. no thanks.

sorry to complain. i just am at a loss as to why i can't be treated again with 5mg hydrocodone 3x a day. how am i supposed to earn money and take care of bills, survive if I can't function? Do they want us to be homeless? Our system and country is getting more fucked every day. I am a good kind talented person and they do not care.

What a long strange trip it's been

Offline MarkintheDark

  • Member
  • Posts: 142
Re: A little help, advice please Getting a second opinion
« Reply #4 on: August 23, 2018, 02:56:43 pm »
I'm so sorry you have to endure this.  Pain such as you're experiencing affects everything you do.

I'm on an FB group for LTS and a similar discussion came up concerning leg pain.  Of course the discussion briefly diverted to neuropathy, but this is different.

One person offered up that amitriptyline had worked for him.  I Googled it and, though an antidepressant, lower doses are also widely used to block the long-term (chronic) pain.  I realize this may sound too similar to what you've already tried, but I thought I'd put it out there. <3 
HIV dx - 02/93
AIDS dx - 07/01
Rilpivirine/Cabotegravir guinea pig since 01/17

Offline guitargal

  • Member
  • Posts: 114
Re: A little help, advice please Getting a second opinion
« Reply #5 on: September 03, 2018, 01:29:51 pm »
Thanks Martin, for the reply,
I tried nortriptaline back in 2013 ? when i was at my worse.  It is supposed to help well with foot neuropathy so I gave it a try for the whole body pain.
I think it may have helped little help in the foot department as my feet were bothering me a lot back then, but could not get past the doom and gloom.

I remember I took it for about 7 - 10 days and I cried a lot. Not from the pain, but from this feeling I lost my soul.  I stuck it out as long as I could, as they say you have to wait for for antidepressants to work. When I was not in bed,  I would sit in a chair by the window look out and cry.

 An overwhelming sense of negativity. I felt slow in thinking, talking and numb emotionally, like I was not me anymore. I had a hard enough time trying to smile and keep happy thoughts of hope and healing through the pain, but I couldn't even smile or really communicate my thoughts verbally. just a blob.

and so it goes.
What a long strange trip it's been


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