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Author Topic: I suppose it could be worse .  (Read 3445 times)

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Online Jeff G

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I suppose it could be worse .
« on: July 26, 2009, 11:12:49 PM »
 After being POZ for 24 years I sometimes feel I have lost my fear of the disease but every now and then that fear comes back again . I have been sick with a cold or sinus infection and on antibiotics 5 times since last October . I have been dealing with pain and fatigue from mild to severe for years . My doctors never have been able to figure out why I hurt so bad . I was in pain management and became dependent on narcotics for many years . After awhile narcotics did not help anymore and I was in pain and dependent on the drugs . I realized that what ever was causing the pain wasn't going to kill me and I had no choice left but to go through a grueling month of withdrawal ... but I made it cold turkey .

Now the pain is back worse than ever , my body , arms and legs ache and burn so bad most days its hard to drink my coffee in the morning , just lifting the cup is a painful thing to do . I will tell my doctors all this but have no hope of doing anything about it other than running up expensive bills on test that never diagnose the underling problem . I just felt like venting here a bit . Maybe one of you long timers like me have been through this as well and can suggest ways of dealing with chronic pain with out narcotics . I know I will be OK , I have been through all this before but some times like tonight this all seems new again . 

Offline Miss Philicia

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Re: I suppose it could be worse .
« Reply #1 on: July 26, 2009, 11:42:44 PM »
Hmmm.  Jg, sorry to hear of this -- don't really have any insight.  Seems a bit crucial though to get a handle on all of this.  5 antibiotics in 9 months? You poor thing.  I guess you're saying that the pain thing is completely unconnected and some weird underlying condition?  Is it even necessarily HIV related I wonder.  But yes, repeated testing with no proper diagnosis and/or resolution is very frustrating.
"Iíve slept with enough men to know that Iím not gay"

Online Jeff G

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Re: I suppose it could be worse .
« Reply #2 on: July 26, 2009, 11:53:30 PM »
 Thanks MP ... My doctors all say as far as they know my pain issue is not HIV related . My cd4 count is 500 and I'm undetectable .   I have been told that some people with HIV do complain about pain . One reason I'm grumpy about all this is I know when I see the doc next month he will want to do more test ... test that I have lost faith in so you called this one correctly , I'm just frustrated .   

Offline BT65

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Re: I suppose it could be worse .
« Reply #3 on: July 27, 2009, 06:34:23 AM »
Hey sweetie,

I have chronic pain in certain parts of my body a lot, and I'm not 100% sure what causes the pain.  But, not to the point where picking up my coffee in the morning is painful.  Have you ever seen a rheumatologist?  I just wonder if it's some form of arthritis.  You may want to mention it to your doctor. 

Sorry about all the infections you've had.  I do hope you feel better.  And kudos for doing that cold turkey thing.  I know you're aware I did that awhile back also, so I know how difficult that can be.  Good luck, dear, and let me know how you're doing, kay?
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline mewithu

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Re: I suppose it could be worse .
« Reply #4 on: July 27, 2009, 11:46:29 AM »
Do You take lipotor by chance.
1997 is when I found out, being deathly ill. I had to go to the hospital due to extreme headache and fever. I fell coma like,  two months later weighing 95 pounds and in extreme pain and awoke to knowledge of Pancreatis, Cryptococcal Meningitis, Thrush,Severe Diarea,  Wasting, PCP pneumonia. No eating, only through tpn. Very sick, I was lucky I had good insurance with the company I worked for. I was in the hospital for three months that time. 
(2010 Now doing OK cd4=210  VL= < 75)
I have become resistant to many nukes and non nukes, Now on Reyataz, , Combivir. Working well for me not too many side effects.  I have the wasting syndrome, Fatigue  . Hard to deal with but believe it or not I have been through worse. Three Pulmonary Embolism's in my life. 2012 520 t's <20 V load

Online Jeff G

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Re: I suppose it could be worse .
« Reply #5 on: July 27, 2009, 12:41:14 PM »
Thanks for the replies ... My pain issue predates any medication I'm on now . I have been to see a neurologist , rheumatolagist , allergy doc and a shrink just in case I'm not really in pain and am just nuts . I useally just ignore the pain and go on and do what I want to do .
This morning I vacuumed my car out and now my right arm hurts so bad I cant use it for the rest of the day .

My head is in a better place today and I will not let this get me down . I'm going to clean my house , give the dog a bath and talk to my doctor next week when I see him .  
« Last Edit: July 27, 2009, 01:11:40 PM by jg1962 »

Offline Joe K

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Re: I suppose it could be worse .
« Reply #6 on: July 27, 2009, 12:58:59 PM »
I am so sorry to hear about your constant pain issues.  Do you have access to any type of a pain clinic?  My husband has nerve damage in his legs and he just tried a treatment consisting of Methadone and THC capsules.  Unfortunately it did not work, but they had many options available.  Another thought would be to check for any clinical trails that may involve pain, whether HIV related or not and there might be something there.  While I share your frustration with tests, I believe you have a real quality of life issue and there must be someone who can help you find the relief you seek.

Online Jeff G

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Re: I suppose it could be worse .
« Reply #7 on: August 14, 2009, 10:18:16 AM »
 It seems the pain in my arms was caused by statins I was taking for my cholesterol . It was suggested to me here by mewithu but I had been on them so long without a problem I didn't think it was connected .

Thanks to my pharmacist for warning me that I should ask my doc about such high doses combined together . I have complained in the last few visits about muscle pain to my doctors but it took a pharmacy computer to figure out why I was in such pain .

Offline BT65

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Re: I suppose it could be worse .
« Reply #8 on: August 14, 2009, 03:37:12 PM »
Oh, I didn't know you were on statins (did I miss that somewhere).  I had to quit taking Lipitor for bad muscle aches.  I hope you can find one that doesn't do this.  Yeah, I always figure pharmacists know better about meds than doctors.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Online Jeff G

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Re: I suppose it could be worse .
« Reply #9 on: August 14, 2009, 04:07:22 PM »
Thanks Betty  . I have dealt with chronic pain syndrome for so long without a diagnosis of whats causing the pain I just gave up trying to find out why and began to take it for granted that I was going to hurt but it wasn't gonna kill me . When the joint and arm pain started and progressed I just accepted as part of my mystery pains . I have been told by many people other than my doctor that the statins I'm on could be the source of some of my discomfort but I never listened until the pharmacy called . I guess I have learned a lession here . When you ask people for advice it may be helpful to actually listen to what they have to say .

Offline AndyArrow

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Re: I suppose it could be worse .
« Reply #10 on: August 15, 2009, 08:19:42 AM »
Glad to hear you have found the source of the pain.  The doctors just aren't warning people about all the dangers statins pose.  About 4 - 5 yrs ago my other half was rush to the hospital having severe pains and heart distress (the heart is just a big muscle after all) and they couldn't figure out what was cause the problems.  They ended up taking him off Zocor and as if by magic the troubles stopped.  After his bypass surgery the new cardiologist wants him to go back on Zocor temporarily ... we'll have to watch this very closely.
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Online Jeff G

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Re: I suppose it could be worse .
« Reply #11 on: August 15, 2009, 10:20:03 AM »
Thanks Andy ... Please let me know how he tolerates it the next time around .

I'm wondering what my docs will do next to treat my cholesterol and lipids . Mine were sky high . I think my lipids were 1600 at one point , dispute aggressive treatment my cholesterol was still near 400 awhile back . Before statins my blood was so full of fat once it would not spin down properly to be tested . 

Offline BT65

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Re: I suppose it could be worse .
« Reply #12 on: August 15, 2009, 11:03:49 PM »
Jg, they can try other statins.  According to a nurse I talked to, not all of them will do that.  It's kind of a personal thing (does that make sense).
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Online Jeff G

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Re: I suppose it could be worse .
« Reply #13 on: August 15, 2009, 11:10:37 PM »
That makes sense to me Betty . I will just have to do something I'm not good at , be patient . 

Offline AndyArrow

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Re: I suppose it could be worse .
« Reply #14 on: August 26, 2009, 07:49:37 AM »
Thanks Andy ... Please let me know how he tolerates it the next time around .

I'm wondering what my docs will do next to treat my cholesterol and lipids . Mine were sky high . I think my lipids were 1600 at one point , dispute aggressive treatment my cholesterol was still near 400 awhile back . Before statins my blood was so full of fat once it would not spin down properly to be tested . 

They've decided to try Lipitor this time and we will just monitor it and see how he does.  He actually doesn't have a problem with his lipids but because of the artificial heart valve the want him on a statin.  Good luck getting yours down pain free!!
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

 


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