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Monday, July 18, 2011

The Bottom Line

So these are the facts:

1. I have been diagnosed with pseudo porphyia.
2.Pseudo Porphyria causes nasty, scabby, ugly scars on your skin and prevents them from healing.
3.Psuedo Porphyia is caused by NSAIDS.
4. I have had osteoarthritis for over 25 years.
5. I am allergic to Tramadol.
6.If you can't take NSAIDS the next recommended drug is Tramadol
7. If you can't take Tramadol the next step is Narcotics.
8.Narcotics are a slippery slope that just leads to higher and higher doses.
9. I don't want to take Narcotics.
10. It hurts, it hurts all the time, it hurts really, really bad.

I am trying to take Motrin or Tylenol and only take the Vicodin when I can't stand it. The problem is when you hurt like this you get crabby and grouchy and strike out at the loved ones around you and I hate that. Poor J is taking such a beating because he is the one here with me. I am hoping that as the last of the NSAIDS leave my body the pain will peak and I will be able to build up a tolerance to it. And when we get back from our quick trip up North I am going to make an appointment with the pain clinic to see if I would be a good candidate for accupuncture, biofeed back or some other treatment I am not aware of. If you know of anything please let me know. Thanks for listenting.


  1. I so wish I knew of something Joyce Ann. We are in similar places. I did a post on my "pseduo" gout with the hope I could find the same answers you are seeking. No luck so far.

    This is one reason I haven't wanted to take NSAID's, plus they also mess up your insides so much.
    I presently take Tramadol, which helps me a lot but Tramadol is just as addictive as narcotics. Funny how they have all this "pseudo" stuff nowadays. Vicodin and Tramadol are pseudo narcotics.
    If things worsen for me, I will turn to narcotics before having surgery I think. At least narcotics, don't mess up your body the way some of this newer stuff does.
    I am still researching. Oh! have you considered marijuana? It is supposed to work very well for pain. I've been reading another blog about a man who started using it recently because nothing was helping him. He says it helps him immensely. I've tried it before but it makes me too paranoid.
    I've also heard mindfulness training helps a great deal with chronic pain. I am practicing using it myself, but on flare-up days, you would not want to hear what I think about that as a solution.
    Please let me know if you find anything that helps, and I will do the same for you.

  2. What category is Aleve, Joyce? My dad takes that and it helps him alot. He hates taking the morphine becuase it makes him sad...almost like a different person. It's too bad about Tramadol...I took that once and it helped a lot..but agree with Linda..it was addicting though they say it is not. I acutally thought there was even a little anti-depressant in it(which I did not want)....I weaned myself off. (not that I took it very long but it was like I wanted it). My sister had chronic pain for a year..stomach. She FINALLY took Cymbalta (anti-depressant) because they said it would help with the pain. It did, I must say..they also suggest that for fibro...she took it for about six months and stopped..the pain has stayed away. Let us know what happens...tell J. to hang in there...

  3. P.S. Maybe take the Vicodin to get the pain under control and then taper off to the least amount. Just to have a pain free couple of days would be worth it....Front Porch in the Mountains(something like that..she is on my blog roll) deals with lots of pain from fibro...she might have some advice..

  4. Joyce,,me again..sorry..I guess I don't follow her..can't see how to follow. But anyway she left a comment on my last post about my dad...From my Front Porch....she wants to hear from peple with chronic pain...you will like her.

  5. I can so totally relate. The narcotics do change everything, but for me, at least, they take the worst of the pain away. I can't make it without them but I worry about the long term. Hell, I have already been on them long term...

    I hope there will be something that can help you. Where is your pain? All over, certain places? There are some topical things I have used from time to time that has helped...

    Hugs, friend. You are not alone.

  6. I recalled something this afternoon while reading on arthritis. One of the causes of pseudo gout can be a magnesium deficiency. I had been taking magnesium supplements for a long time, given to me by my doctor for stress and nerves, and they can also help with sleep. I ran out of the magnesium a couple of months ago and it was shortly after that I had my first flare-up. Of course, it could be coincidental but magnesium is inexpensive and it cannot hurt you. I have ordered some online and should have them in a week or so and will let you know if they help.
    The following is a reliable website you may want to check out.
    from the U of Maryland.

  7. The group we go to does acupuncture and biofeedback, as well as other methods. They are in Hinsdale. Real easy to get there. I'm sure there are some in the Joliet area as well. Do not go to Dr. Golden or Dr. Mikuzis.

  8. Hi Joyce!
    Have tried Neurontin on a daily basis? I take the highest dosage. I am constaly taking meds all day to split it up and not dump so much in my system at once!
    Here is a link

    I also take Cymbalta. For the pain measure and depression part,because who has chronic pain without depression!
    A long-acting pain med is better than dosing with one such as Vicodin, every 4-6 hours. It will continue to work for 12-24 hours, so maybe ask your doc about that!
    I go to wonderful doc (who is younger than me! In his mid 30's) I really do believe in finding the right physician.
    I have tried Bio-feedback etc. None of those worked for me. But, maybe they will for you :)
    On days when the pain is unbearable I couldn't even begin doing my bio-feedback!
    I hope you find the right doc and the right combo of meds. Both mean the world!
    You are in my prayers...
    xo, misha

  9. Yes, yes, Pain Clinic is crucial. They know things, alternative things, to help get mind over matter. Good luck and will pray for pain-free days. Debi