Re: Not tolerating meds

[Guest guest]

,

How much pain are you in? I have had severe pain for over 15 years and being a Chiropractor I fought taking pain meds and tried natural remedies and when they didn't work I tried all the non-narcotic meds. Neurontin worked great in high amounts for me but after a few weeks gave me narcolepsy. I didn't realize I had Sarcoid and had nerve damage and other side effects from it. I was really getting depressed because my way of life was miserable. My pain scales were close to 10. The funny thing is, if it were any other patient I would have sent them for serious pain meds until we figured it out (I hate seeing people in pain).

I finally went to a friend who convinced me that going through life in pain in no way to go through life and I gave in. It has been a roller coaster ride especially since the biopsy came back for Sarc 4 years ago and the steroids started etc. then the arthritis and if you got through the FSR book I have pain in 80% of the places we can have it. And a few they haven't written about lol.

Most Pain specialist in my area are idiots. They make all their money off of injections and I've had talks with the Doc in 2 of the biggest groups and what they really know and care about pain management you could fit in a thimble.

If you have a primary start there. There are so many immediate and time released meds that can help you. Don't be afraid of the term narcotic or addiction. Very few people who are in actual pain actually become addicted to the meds and if you have someone who knows what they're doing they can get you off of them if you need pretty painlessly.

I've found in the last 15 years after having it all happen to me that I can help 90% of my patients naturally but the ones that I can't I help get out of pain any way we can. I really believe the depression will quickly decrease once you deal with the pain.

I actually drive an hour and a half to a Neurologist who is also a pain specialist who understand s about what we're going through and it's worth the drive. I also drive 2 hours to a Pulmonologist in NY because the guys in my area know nothing about Sarc.

Let me know if I can help

Mitch

Not tolerating meds

I have had a rough year. Just recently the doctor tried me on a new med, Cymbalta, from which i developed side effects of increased chest tightness and pain. A home health nurse has also been visiting me once a week. Every time they try a new med for me...I don't tolerate it. Previously i tried neurontin and that had side effects for me, too. At least the nurse said she told the doctor i should visit a pain clinic. And she also told the doc that i should try another antidepressant. I took a test for depression and scored very high. I wish they would try an immune supressant but the depression and pain are higher on their radar. and i am too depressed to get mad enough to fight for more. ...maybe if we get a handle on the depression i will

get some balls and fight harder. lol.... S. Life may not always be the party we hoped for, but while we're here we might as well dance!

[Guest guest]

, Hang in there, I know depression is hell, been there too, but if you don't get a handle on the pain, ie the disease with something, you will have a hard time getting a handle on the depression.  It's a viscous circle, and I'm sorry your in it, can you see a counselor?  I did when I was depressed over this crazy disease, that and an antidepressant really helped me, but I was also on at least Pred. fighting for something stronger.  Hang in there, and know I am praying for you.  Do you have someone else who can help you fight for treatment?

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

I have had a rough year.  Just recently the doctor tried me on a new med, Cymbalta, from which i developed side effects of increased chest tightness and pain.  A home health nurse has also been visiting me once a week.  Every time they try a new med for me...I don't tolerate it.  Previously i tried neurontin and that had side effects for me, too.   At least the nurse said she told the doctor i should visit a pain clinic.  And she also told the doc that i should try another antidepressant.   I took a test for depression and scored very high.     I wish they would try an immune supressant but the depression and pain are higher on their radar.  and i am too depressed to get mad enough to fight for more.   ...maybe if we get a handle on the depression i will

get some balls and fight harder.              lol.... S.                                            Life may not always be the party we hoped for, but while we're here we might as well dance!

[Guest guest]

thanks Marla. Today i am furious! Once again i am handed over to another doctor. and I've seen this rheumatologist before and he did NOTHING. after listening to the message on the answering machine i cried for an hour but now i am just MAD AS HELL. 'F' it all! cOME ON!... this med didn't work...so hand me over to another doc...again!!??!!??!!!!! I miss my old doc SO MUUUUCH> I need a whole new doc all together but i am over it. I'm taking the week off to pray and think it over....AGAIN. I sent hubby out to get me a bag of peanut m n m's to drown my sorrows for today. FFFF the doctors!

I have had a rough year. Just recently the doctor tried me on a new med, Cymbalta, from which i developed side effects of increased chest tightness and pain. A home health nurse has also been visiting me once a week. Every time they try a new med for me...I don't tolerate it. Previously i tried neurontin and that had side effects for me, too. At least the nurse said she told the doctor i should visit a pain clinic. And she also told the doc that i should try another antidepressant. I took a test for depression and scored very high. I wish they would try an immune supressant but the depression and pain are higher on their radar. and i am too depressed to get mad enough to fight for more. ...maybe if we get a handle on the depression i will get some balls and fight

harder. lol.... S. Life may not always be the party we hoped for, but while we're here we might as well dance!

[Guest guest]

, I'm sorry that you are struggling so much. I've been fortunate in being able to tolerate most meds. In fact, I don't have any true allergies, although I can't take the Cymbalta any more because it worsened my dry eyes; then there was that unfortunate incident with my car & the telephone pole several years ago that we decided was the result of Neurontin. But other than those 2 drugs, I can take anything! It seems like some folks develop more sensitivities as time goes on; I don't know if it's the passage of time or the cumulative effect of the various drugs. There is also the factor of drug interactions. When we are on many drugs, I think it's impossible for a doctor, pharmacist or computer to determine all the possible drug interactions, especially factoring in our individual body chemistries. This isn't very useful for you, I guess, but maybe it's an explanation.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: neurosarcoidosis From: mary_s777@...Date: Tue, 2 Nov 2010 20:25:13 -0700Subject: Not tolerating meds

I have had a rough year. Just recently the doctor tried me on a new med, Cymbalta, from which i developed side effects of increased chest tightness and pain. A home health nurse has also been visiting me once a week. Every time they try a new med for me...I don't tolerate it. Previously i tried neurontin and that had side effects for me, too. At least the nurse said she told the doctor i should visit a pain clinic. And she also told the doc that i should try another antidepressant. I took a test for depression and scored very high. I wish they would try an immune supressant but the depression and pain are higher on their radar. and i am too depressed to get mad enough to fight for more. ...maybe if we get a handle on the depression i will get some balls and fight harder. lol.... S. Life may not always be the party we hoped for, but while we're here we might as well dance!

[Guest guest]

mmm enjoy some for me! And I'll be praying for you this week too. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

thanks Marla.    Today i am furious!   Once again i am handed over to another doctor.   and I've seen this rheumatologist before and he did NOTHING.  after listening to the message on the answering machine i cried for an hour but now i am just MAD AS HELL.  'F' it all!   cOME ON!...  this med didn't work...so hand me over to another doc...again!!??!!??!!!!!   I miss my old doc SO MUUUUCH>    I need a whole new doc all together but i am over it.   I'm taking the week off to pray and think it over....AGAIN.  I sent hubby out to get me a bag of peanut m n m's to drown my sorrows for today.    FFFF   the doctors!   

 

I have had a rough year.  Just recently the doctor tried me on a new med, Cymbalta, from which i developed side effects of increased chest tightness and pain.  A home health nurse has also been visiting me once a week.  Every time they try a new med for me...I don't tolerate it.  Previously i tried neurontin and that had side effects for me, too.   At least the nurse said she told the doctor i should visit a pain clinic.  And she also told the doc that i should try another antidepressant.   I took a test for depression and scored very high.     I wish they would try an immune supressant but the depression and pain are higher on their radar.  and i am too depressed to get mad enough to fight for more.   ...maybe if we get a handle on the depression i will get some balls and fight

harder.              lol.... S.                                            Life may not always be the party we hoped for, but while we're here we might as well dance!

[Guest guest]

Hey , please becareful with taking to much or to many drugs at one time, you know the more you take the more the risk for drug interaction. What immunosuppresant do you think you need to try? Try to just calm down, let them get your pain and your depression under control, and make sure that these drugs are not interacting with the rest of your meds.. then once you're feeling better they can try a new or different immunosuppressant.. I certainly hope you feel better soon.. Do you happen to know what your last CRP and/or Ace level was? Mine has been over 200, but we had to get me under control before we could do much else..

Hugs,

NS Moderator

Not tolerating meds

I have had a rough year. Just recently the doctor tried me on a new med, Cymbalta, from which i developed side effects of increased chest tightness and pain. A home health nurse has also been visiting me once a week. Every time they try a new med for me...I don't tolerate it. Previously i tried neurontin and that had side effects for me, too. At least the nurse said she told the doctor i should visit a pain clinic. And she also told the doc that i should try another antidepressant. I took a test for depression and scored very high. I wish they would try an immune supressant but the depression and pain are higher on their radar. and i am too depressed to get mad enough to fight for more. ...maybe if we get a handle on the depression i will get some balls and fight harder. lol.... S. Life may not always be the party we hoped for, but while we're here we might as well dance!