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stmll
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1#
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Registered:09/04/2007
Time spent: 0 hours
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(Date Posted:04/08/2007 17:35:07)
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Hi Jori,
I have not had any of my Dr.'s say LPHS is stress related, but from personal experience I find that if I get to stressed, emotionally, I get in really bad shape, or if I do too much physiacally, I am not able to work anymore, but if I clean the house too much in a day, I am in trouble, also I have found that if I have alot of caffine or red meat it triggers an attack, It is amazing that we all can have alot of the same symptoms, but then something entirely diffrent, I don;t pass alot of clots, mind you my urine always tests postive for micrscopic urine, mine is the pain, if I do any of the above, I am on the floor screaming in pain, I have read some papers on-line saying that emotional stress can be a trigger for LPHS, jsut a note also, I know there is ot alot of info when you google LPHS, my Dr. in London actually called it PHS, Pain Hematuria Syndrome, seems more info comes up,and the info that comes up is still LPHS, I asked Dr. was that the same as LPHS, he said yes,that's just what we call it., Jori if you don't mind me asking what meds are you on? I have always worked, I work in Insurance and I had to leave a job that I loved due to the pain, I am on Fentanyl patch 50 mgs, 75mgs of Lyrica, Percocet for BT pain-which is like eating smarties, does not damn thing, and Amytriplyne to help me sleep at night, and still in pain EVERYDAY!!, that's why I am willing to do the AT as I need to get some quality of life back, I am only 34 and I can't be like this for the rest of my life,sitting at home in my recliner due to pain.. Anyway have a great day and I will talk with you soon.
Take Care
Tracey |
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reddvl31
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2#
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Rank:none
Score:159
Posts:159
Registered:24/10/2002
Time spent: 0 hours
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(Date Posted:06/08/2007 02:33:07)
Hi Tracey,
You asked me what medications I am taking....I take MS Contin (morphine) 200mg a day, MSIR (immediate release morphine) 15 mg a day, Zofran (what they give cancer patients who are having chemotherapy for nausea and vomitting) 8 mg twice a day, and Xanax (anti-anxiety, but I use it to help me sleep) 0.5 mg twice a day. Now those doses that I gave you are after I had the Pulsed Radiofrequency Ablation. Before I had the PRF, I was on 2400 mg of MS Contin and 90mg of MSIR for pain a day. Yes, 2400 mg's of morphine a day (that is 2.4 grams a day!!). And it didn't even put a dent into my pain. I have taken every kind of opiate and pain medication there is in the U.S. for pain....started out way back when on Lortab, Vicodin, Hydrocodone, Dilaudid, Oxycontin, Methadone, Fentynol (Duragesic patch), etc. NONE of them helped. I just kept going up and up on each one, and then would switch to a different one to see if that medication could help. I have tried muscle relaxers, anti-depressants, anti-seizure, blood pressure, sleeping, and anti-inflammatory medications as well. The only one that I still take is called Levsin, and it is a smooth muscle relaxer. I take it when I am passing blood clots. Sometimes it helps, sometimes it doesn't. When I was on the Duragesic patch, I was up to 125 micrograms every 3 days. I had the 100 and then a 25 microgram patch on at the same time....but seeing as I weigh 125 pounds, I was building up too much Fentynol in my body, it started to become toxic to my body and I almost over-dosed on it. As for the Elavil or Amitriptyline, I started out at 10 mg and went up to 90 mg a day. It was ridiculous to be on 90 mg, but I was desperate to try and get some sleep, seeing as I too, have a full-time job that I had to get to. I am 33 years old and my next and pretty much only option left for pain management is to get a morphine pump implanted in me. For right now the PRF is working wonders, and I have so much of my life back...not 100%, but a heck of a lot more than I had before...so until I cannot have the PRF done anymore, I will stick with that, and hopefully be pain-free in my kidney (which I still am pain-free after having the PRF over 8 months ago!) The only reason I am still on the minimal amount of pain meds is because of all the blood clots that I pass and how painful that can be. But the PRF has been a godsend for the kidney pain. Sorry this is so long....but I hope it answers your question!!
Take care,
Jori
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tootsiewest
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3#
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Registered:12/04/2004
Time spent: 0 hours
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(Date Posted:10/09/2007 07:02:32)
Hello!
I just wanted to reply!
It's a funny story for your question about stress...... I found out my ex husband was cheating on me with my friend and ....BOOM.... LUPUS and LPHS! My doctor said that because of the stress that it was most likely the cause. I had never really been sick before except female issues. About 2 months after his bags were packed and on the front porch is when the migraines started and the severe left flank pain began! Can you believe it! Dr.Hebert at OSU diagnosed me! It was the funniest doctors appointment I've ever had but also the most depressing. If you know him you's know why I say the appointment was so funny. He starts rattling off quotes and paragraphs from his latest research- He is the #1 researcher for LPHS if you don't know. I feel like I need a Master's Degree just to know two words he is saying. And he reminds me of Jerry Springer with Reddish Grey hair and he never stops smiling. Sorry.... He cracks me up.
Anyways, If I worry or get stressed about something which is my whole life I am in bed 24/7. I had to get a pain pump implanted last year. My body resists alot of different medications. I could take what most doctors would say would tranquilize an elephant (not what every woman wants to hear) and be perfectly fine except I might need a little Zofran or Compazine. They tried to put me out for my first kidney biopsy and it took them three tries and I was still not going down. They finally called in the surgeon and said "I think we have a problem!" It's like that everytime I go into the hospital. I was going to the ER (useless at times) every other week. My pain management doctor was against doint the pain pumps but because since I was such a hard case he decided to make me his trial. That was a year ago.
Obviously, it hasn't helped with the stress levels but it has helped calmed down some of the pain. Before I couldn't get out of bed, partly due to the Lupus, and now I have at least some good days. I think the days will continue to get better. It's a work in progress. It's like any pain med, you don't want to use the highest dose right off tostart then there would be no where to go up from there! I am on morphine and marcaine which is like a dental novacaine. I have it implanted in my abdomen and there is a catheter that was implanted through my back and up my spine into my spinal cord (T10). I'm not sure what the rate flows at but I think I am getting about 10 grams of morph. a day continuously. I am also on fentora which is fentanyl, percocet, topamax, midrin, xanax, wellbutrin,plaquenil,zanaflex,lyrica, ativan,compazine,triazolam and I am blanking..............
I am having really bad migraine episodes. My stress is envolved with that right now. Isn't weird how it can go from intense pain for several years to severe headaches? I did find out that I have a unspecified mass on the right side of my brain??? What the heLL is that? I have blackouts and say bizzare off the wall things (more than normal!). It is really scary. The hard thing is that my husband doesn't seem to want to care about my medical happenings in my life. I think thats part of my problem. Any time you hear mass and brain it doesn't sound very good. My doctor will give me what ever medication I want. That is very concerning to me as well. I just do not have a good feeling. He just said it was unspecified and we would do some nerve blocks with botox injections in them to help the pain. It helps success rate from 30% to 65%. It's painful but if it will help with pain longterm! What else worries me is that my pain pump isn't taking care of the pain! If any one has any words of encouragement or experience to pass along I sure could use it! I like humor too!!!!! Sorry I was a little windy! Haven't been on the site forever!
Tara
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