Author Topic: An on-going thread (Read 327873 times)

This isn't a driving issue...lol I'm so used to my little S10 that has a flat faced front end. The way this
Dodge is made, You can't see where the front end stops. Then you add the huge bumper to the mix that you also can't see, and it's quite easy to "tap" things. Since then, I'm catching myself parking several feet short and have to redo it.

aztecan · « **Reply #705 on:** January 20, 2015, 11:01:25 pm »

Why do you think I drive a Fiat?

HUGGLES,

Mark

Jeff G · « **Reply #706 on:** January 21, 2015, 01:46:43 pm »

Update on cymbalta ... or I should say cymzombie .

My pain docs asked me to try it for a month, next Tuesday will a month and I see my doc that day and I will discontinue the drug . Cymbalta reminds me a bit of Atripla with the dark thoughts and dreams ... I have been sleeping about 14 hours a day on this med and I cant wait to stop taking it . I always do what my doctors ask of me so I can honestly say I do my part in staying well or being a little better but this past month has been the worst in 10 years . Its time for a nap now .

Miss Philicia · « **Reply #707 on:** January 21, 2015, 03:31:59 pm »

That sounds awful. I would have given up after 2 weeks. Oddly when I took Cymbalta I don't recall feeling anything, but it raised my blood pressure so I went off of it. Sleeping 14 hours a day obviously is not acceptable.

Are they going to have you try something else or are you just going to cut them off on that subject?

ps: now that I'm off Gapabentin completely I don't feel like eating a bag of Doritos every day. My libido hasn't really returned though. It might have disappeared for good now.

Jeff G · « **Reply #708 on:** January 21, 2015, 06:23:54 pm »

Quote from: Miss Philicia on January 21, 2015, 03:31:59 pm

That sounds awful. I would have given up after 2 weeks. Oddly when I took Cymbalta I don't recall feeling anything, but it raised my blood pressure so I went off of it. Sleeping 14 hours a day obviously is not acceptable.

Are they going to have you try something else or are you just going to cut them off on that subject?

ps: now that I'm off Gapabentin completely I don't feel like eating a bag of Doritos every day. My libido hasn't really returned though. It might have disappeared for good now.

Unless they have invented something new in the last month there is nothing new for me to try … Thats the tiresome thing of it all, I am never going to get better but they keep wanting to try the same failed things over and over again and I am just frustrated with them now and will put a stop to it come Tuesday … Im done .

Tonny2 · « **Reply #709 on:** January 21, 2015, 07:14:17 pm »

Quote from: Jeff G on January 21, 2015, 06:23:54 pm

Unless they have invented something new in the last month there is nothing new for me to try … Thats the tiresome thing of it all, I am never going to get better but they keep wanting to try the same failed things over and over again and I am just frustrated with them now and will put a stop to it come Tuesday … Im done .

ojo Hi Jeff, I'm sorry, I didn't know you were going through all this, with me eye problems, sometimes it is impossible to read all the threads....I found out what an anxiety attacks were after taking Cymbalta, so I stopped using it, it was given to me for pain...I hope I wish I could help you, I can just send you a big hug and hope you feel better....more hugs ojo

mitch777 · « **Reply #710 on:** January 21, 2015, 07:18:14 pm »

Quote from: Jeff G on January 21, 2015, 06:23:54 pm

Unless they have invented something new in the last month there is nothing new for me to try … Thats the tiresome thing of it all, I am never going to get better but they keep wanting to try the same failed things over and over again and I am just frustrated with them now and will put a stop to it come Tuesday … Im done .

I know the feeling as I'm sure David does. Hate it when the treatment turns out worse than the ailment itself. Another trip around the merry-go-round as my Neurologist says. "Tell me when you want to get off".

Wade · « **Reply #711 on:** January 21, 2015, 08:59:36 pm »

Mark.
Think warm is better than cold for a broken toe,
just don't injure yourself worse trying to get it there !!! LOL
And Jeff.... You Will Get Better....We Need You !!

wolfter · « **Reply #712 on:** January 22, 2015, 01:19:14 pm »

I just couldn't imagine existing constantly in pain and truly feel for all of you that do.

Jeff G · « **Reply #713 on:** January 22, 2015, 01:28:34 pm »

Quote from: wolfter on January 22, 2015, 01:19:14 pm

I just couldn't imagine existing constantly in pain and truly feel for all of you that do.

Its physically and emotionally draining and requires you to develop coping skills to deal with it as well as having reasonable expectations about how much relief treatment can bring .

Tonny2 · « **Reply #714 on:** January 22, 2015, 02:10:52 pm »

ojo good for you Jeff, I must admit that there are times that I have thought in throwing the towel, for the same reason you mentioned, but I'm still fighting to try to solve my eye and pain problems...keep fighting my friend...hugs ojo

Theyer · « **Reply #715 on:** January 22, 2015, 03:07:32 pm »

All off our condition are very common in LTS , perhaps though not the pain off a ulcer . Although I have stopped any further investigation into why I need three to recover from any physical activity I am continuing with the Osteo clinic and hope to have my Drug regime by the end off the week + the Dental work .
Good news the Drug treatment for my low blood pressure is working , so therefore a drop in falls.

50days on anti -bees made me winch Jeff , I sorry you have been thro that.

wolfter · « **Reply #716 on:** January 22, 2015, 03:31:09 pm »

I'm sure I posted in another thread, but I return to the osteo doctors in the big city Monday. They're bone specialists, but I think they're more like money suckers. I have to call by tomorrow to decide if I'm rescheduling or canceling this appt.

Well, I am. I suffered Boniva for over a year. Knowing I could not leave the house for at least 2 days, scheduling it around priorities, and then being told it was all in vain? How do they know? It's important any my doc agrees ( I think).

Obviously, I have bone issues but I can't get it out of my head that we should at least see if the current treatment saw a trend?

AlanBama · « **Reply #717 on:** January 22, 2015, 03:35:53 pm »

Jeff, cymbalta turned me into a zombie; I hated it. They have my partner's 92 yr old mother on it in the Nursing Home -- she's now zombie-fied. I am glad you are stopping this drug.

Hope you have a better month in Feb.

HUGS, Alan

Jeff G · « **Reply #718 on:** January 22, 2015, 03:50:57 pm »

Quote from: AlanBama on January 22, 2015, 03:35:53 pm

Jeff, cymbalta turned me into a zombie; I hated it. They have my partner's 92 yr old mother on it in the Nursing Home -- she's now zombie-fied. I am glad you are stopping this drug.

Hope you have a better month in Feb.

HUGS, Alan

Thanks Alan … my probs are small fries to yours and Bettys, if the worst of my problems are sleeping too much and being bitchy I should not complain . Dr Clark called from our clinic today to offer support and an expedited appointment so help is on the way .

I hope you are feeling better and mending . Hopefully you guys can make it to AMG this year… I think its going to be a huge success .

Miss Philicia · « **Reply #719 on:** January 22, 2015, 04:53:05 pm »

On the other hand I have a close friend (non poz) who has Fibromyalgia and has gotten great relief from Cymbalta. Obviously it works for some people and works very well.

Wade · « **Reply #720 on:** January 22, 2015, 08:41:30 pm »

OK , haven't read much good about Cymbalta for a pain med , much the same as other posters have stated , but have no personal experience.

I am very lucky also to not suffer from constant neuropathy pain ,had it for a short time in the early 90s,it was hell ! my heart goes out to those who do, I can't imagine what that's like. I have arthritis in many of my joints , but it's not the same I know.

Had my six month follow up with my orthopedic surgeon today, and got before
and after x-ray pics from both knees , I don't know how to post them or I would share ! anyone who can guide me through it feel free to Pm me, shit I can't even figure out how to use the emotions !

Hope to make it to AMG after all these years in Aug ! Would be nice to put faces with names !

Tonny2 · « **Reply #721 on:** January 22, 2015, 08:57:31 pm »

ojo pain is pain buddy bubba..I never have been in any af AMG...where do I find information abou it....and don't worry about not knowing how to upload pictures, sometimes I don't even know my name, lol...hugs ojo

Wade · « **Reply #722 on:** January 22, 2015, 09:07:23 pm »

Hey Tony , you and I are on the same page ! Go all the way down to the last
forum. pretty sure it will be in Memphis in August , I'm bringing a cooler for my underwear if I make it !!!

aztecan · « **Reply #723 on:** January 22, 2015, 09:23:17 pm »

I have neuropathy, but nothing like some of you do. Mine is mostly like walking on shards of broken glass.

Ironically, when I went to the hot springs the day after Christmas, and had to walk through snow and ice barefooted to get to them, it didn't bother me in the least. Actually, I think walking around in 15-degree weather made them numb, which was actually a relief for me.

Regarding AMG, yes, please take a gander at the last section here, at the bottom. It will be in Memphis and the dates, etc., are there as well.

HUGS,

Mark

Tonny2 · « **Reply #724 on:** January 23, 2015, 02:30:48 pm »

ojo Thanks bubba and Mark, for the info, but I guess keep forgetting I'm legally blind and it would be difficult to make it by myself...thanks anyway...I guess I have to start getting rid of my fears of being around by myself.....hugs ojo

BT65 · « **Reply #725 on:** January 23, 2015, 10:05:42 pm »

Greg, they're telling you that you taking Boniva did nothing? I missed that. And you had to stay home for two days when taking it? Was that because you felt like you had the worst flu-y aches ever? That's why I stopped the Fosamax, just wondering if it was like that for you with the Boniva.

So, what, if anything, will you be going on?

wolfter · « **Reply #726 on:** January 24, 2015, 09:40:21 pm »

That's my entire issue Betty, they refused another bone density scan after all this time and simply want to swtich meds. I can't get my head around how we would even know if the Boniva did any good at all. And suggesting a daily injection when not even seeing the results of the last regimen? Not real keen.

Taking Boniva required that I did it when I knew I could stay home for 2 days. There were a host of issues with it. Fatigue, achiness, and worst of all? Running to the restroom constantly and begging that you made it in time. The first day was usually spent in my bed mere feet from my personal toilet. I made it MOST of the time. lol

BT65 · « **Reply #727 on:** January 25, 2015, 06:21:08 pm »

Yes! That's exactly why I stopped Fosamax, though admittedly I had more horrible pains than the runs, though I had that also. I have to have labs, and if everything is okay, I'll start the Forteo. I have to quit these constant breaks.

But, they won't even order another bone density? I'd like to know the real reason for that. It doesn't sound right. Sorry you're going through all this, aggravating.

Miss Philicia · « **Reply #728 on:** January 25, 2015, 07:17:40 pm »

I know Medicare rules only allow a bone density scan once every 24 months so maybe that's part of it, wolf? If "medically necessary" they allow more but maybe your doctor wasn't going to jump that hoop, though I don't see why you wouldn't qualify. Did you confront the doctor on this billing issue?

wolfter · « **Reply #729 on:** January 25, 2015, 07:37:02 pm »

Actually, Medicare didn't want to pay for the original scan as it didn't appear medically necesary. My doctor did jump through hoops to get them to cover the typical 80%. I explained that I would pay the entire cost this time but my doc said he's confident that he could explain why it's needed.

My doc agrees with me and he wants to see what transpires at my appt tomorrow. I already know that I'm not switching meds without seeing how well the current one did. It's another case of being my own advocate and not blindly accepting what someone says that doesn't have any vested interest.

I plan on going to the Columbus appt but will insist that I'm not comfortable making such a radical change without appropriate knowledge.

As part of this switch, I had to do a 24 hour urine collection that I've never had done before. I had regular urine tests but this was showed a 24 collection result of 537.7 My regular creatinine is normal but the extended one if way off.

thanks all, just another hurdle in this lifetime of issues.

wolfter · « **Reply #730 on:** January 26, 2015, 09:05:23 am »

Betty, the bone doctor is highly recommending Forteo also. I guess it's sorta irrational to worry about side affects but I kinda worry that if I had reactions to Boniva and switch to a daily med that I'll be constantly incapacitated.

I'm hoping like hell that the roads won't be too horrid as I attempt city driving. I'm already the person that other motorists pass and flip off and it'll probably be much worse today. On most of the stretch along the interstate it's 70 mph. Wolfie never needs to drive that fast again, even on a dry summer day.

Theyer · « **Reply #731 on:** January 26, 2015, 09:36:14 am »

Wolf it seems to me neglectful to refuse a LTS a Density Scan given how many off us have Osteo

Tomorrow I have my appointment with the Osteo Team to discuss and start my new treatment.Obviously I am hoping to be able to take and benefit from whatever is prescribed but I am wondering is one told is keep taking the drugs as the side effects will wear off?

This is crucial to me if I want to avoid casts. Today my balance and blood pressure is all over the place due to chest cold ( I am hoping )

I will Post tomorrow's outcome and would be grateful to get feedback.

are you home Betty . No more anti
Bees Jeff ? I will go a searching .
Love to all

wolfter · « **Reply #732 on:** January 26, 2015, 09:43:55 am »

Michael, my ID doctor did order a BDS which is how it was determined the severity of my osteo issues. He ordered the Boniva which I've been on for a while but it was determined that I should see a specialist as I continued to have more broken bones. All the literature says Boniva actually takes a while to work and might actually cause further bone loss in the short term before it starts strengthening the bones.

I could deal with the side affects of that drug as it's a short period each month. I guess those of in the "powdery bones" club can start sharing further experiences with the treatments.

OH, and I fell off the deck last week which I didn't mention. I slipped and fell about 3' and didn't break anything so the Boniva might actually be working.

Miss Philicia · « **Reply #733 on:** January 26, 2015, 01:43:22 pm »

I've never had a bone density scan. I've inquired about it but my doctor sees no need for one if I am not experiencing anything indicative of such an issue. Medicare used to not cover them for preventative base line measurements but I think that recently changed so I should ask my doctor again about this now that I am about to turn 50, don't you think? I'm putting it in my notes to ask him for our next appointment.

wolfter · « **Reply #734 on:** January 26, 2015, 01:49:09 pm »

Quote from: Miss Philicia on January 26, 2015, 01:43:22 pm

I've never had a bone density scan. I've inquired about it but my doctor sees no need for one if I am not experiencing anything indicative of such an issue. Medicare used to not cover them for preventative base line measurements but I think that recently changed so I should ask my doctor again about this now that I am about to turn 50, don't you think? I'm putting it in my notes to ask him for our next appointment.

My doctor has changed his entire mindset about getting a baseline due to the huge number of patients who are experiencing this issue. Most of us won't present with the need until an injury happens. I never thought about it until then either. Who would?

My doctor indicated almost half of his patients tested so far show some form of bone loss. I guess this might be the next bane for LTS.

Tonny2 · « **Reply #735 on:** January 26, 2015, 01:58:43 pm »

ojo I asked my primary doctor for a bone density test, some years ago, the results came back and he told me that my bones look like an old man's bones, I showed my ID doctor the results, he said that he wasn't concerned aboout it, so, I just let it go and I haven't have another test done, I hope I don't get any broken bone as I'm a LTS, cross your fingers....hugs, ah, 20 years taking meds ojo

BT65 · « **Reply #736 on:** January 26, 2015, 08:02:36 pm »

I was able to get a bone density done the first time, about 13 years ago. Medicare covered it, and it was a screening.
David, I would say you should get a bone density done. I would want to see where I'm at definitely.

wolfter · « **Reply #737 on:** January 27, 2015, 12:13:44 pm »

Quote from: Tonny2 on January 26, 2015, 01:58:43 pm

ojo I asked my primary doctor for a bone density test, some years ago, the results came back and he told me that my bones look like an old man's bones, I showed my ID doctor the results, he said that he wasn't concerned aboout it, so, I just let it go and I haven't have another test done, I hope I don't get any broken bone as I'm a LTS, cross your fingers....hugs, ah, 20 years taking meds ojo

Hope this doesn't sound harsh, but why would you just "let it go" ? If my ID doctor said he wasn't concerned about something so serious I'd doubt his overall abilities. I don't think a "cross your fingers" approach is adequate at all. Perhaps it's time to broach the subject assertively with him after witnessing what so many of us are experiencing. A few of us are prime examples of how difficult it is to mend our broken bones once it happens.

wolfter · « **Reply #738 on:** January 27, 2015, 12:20:47 pm »

My osteo team impressed me. They truly listened and answered my questions thoroughly. I will be eligible for another a medicare covered bone scan in May so I'll continue the Boniva until then and then they can compare the difference between the 2.

Unfortunately, there are not a lot of studies for them to reference with bone loss and aging with HIV much less where men are concerned. Most of what is known is based on studies involving women.

They strongly urged me to consider the Forteo and I was honest with them that I didn't feel I would be adherent. They appreciated my honesty and understood my fear of needles. Hell, I still hyperventilate when having blood drawn. They even have to constantly tell me to breathe. Since the twice yearly injections (done at their facility) require a prior authorization, they're going to go ahead and start on the approval process.

BT65 · « **Reply #739 on:** January 27, 2015, 05:19:38 pm »

I'm glad you're confident in your osteo practitioners. I will be looking forward to seeing how your bone scans compare. Someone told me that osteoporosis meds weren't proven to work, but that's been awhile ago.

guitargal · « **Reply #740 on:** January 30, 2015, 01:06:38 pm »

Quote from: Jeff G on January 22, 2015, 01:28:34 pm

Its physically and emotionally draining and requires you to develop coping skills to deal with it as well as having reasonable expectations about how much relief treatment can bring .

jeff, cymbalta did not help me. i stayed on it for about 8 months .idk why..they were throwing so many pills at me i was not able to make decisions i guess..i started with 5 mg oxy and then cymbalta and then a month later they added lyrica and klonapin i was in bed all day ..for months..they, the docs, didn't care at all…
i went off lyrica then they added low dose ritinin to combat all the down tired feelings..i "woke up' enough to realize the meds were not doing shit and got off of everything but the oxy.

.was hard to withdraw from the cymbalta..i had to open the capsule and take 1/2 the beads then toughed it out…

you only being a month should be ok.

this pain thing is very hard to deal with mentally.over 3 years now and i still can't cope...i am kind of ok if i take the right amount of oxy, too much and i am out of it all stoned and hate that feeling..too little and my whole body pain comes roaring back and i get afraid angry and upset..

my relationship is falling apart..i tried CBT, EMDR, water physical therapy, acupuncture massage..nothing works!

the neuropathy in my feet is not bad..off and on..it is the fibromyalgia..it started when they took me off hiv meds and then back on..
like an IRIS thing..

now they want me to try welbutrin..works with the dopamine and noreprephrin sp? instead of SSRI…

i read about ketamine experiments. ..oh god no..

oh and i tried nortriptaline..have you? all tired and it made me cry..

and yeah..i have ostepenia..have not had a bone scan since fall of 2011.. they don't care. no one ever mentions it at the doctors..primary or ID..i won't take the osteo meds..so i guess it does not matter…i just do not go out in the snow and ice…so i am shut in for now..i am only 53 WTF!?

Jeff G · « **Reply #741 on:** January 30, 2015, 01:16:10 pm »

I'm off the cymbalta now . I have not really ever found any thing that significantly helped with my chronic pain except for narcotics and since I have been on them for years now they are not working as good as they did any more and I cant keep going up on the dose so I am weaning my myself off pain meds . Before I got back on them life was hard but I got by and I am sure I will again . If things progress as they are now I should be narcotic free in a month. I wont lie, I feel really crappy but its just for a month . I took myself off pain meds once to make it easier to move to another state so I know what I am getting into . My doctors are aware of what I am doing .

Tonny2 · « **Reply #742 on:** January 30, 2015, 02:29:05 pm »

ojo Hello everyone...welcome to the club, where pain meds don't help anymore...what's next?.....@Jeff, have you tried nortriptyline?...it helped me when I started with my neuropatic pain a long time ago, I was on 50mg and Vicodin 2x500mg three times a day (tho I only used twice a day)...it doesn't help anymore, I just take norco 5mh 2x5mg, when my pain is to strong, especially my eye pain, I add half more to my dose of norco....sorry my friend, we have to learn to live with the pain, right? hugs ojo

Jeff G · « **Reply #743 on:** January 30, 2015, 02:59:29 pm »

Quote from: Tonny2 on January 30, 2015, 02:29:05 pm

ojo Hello everyone...welcome to the club, where pain meds don't help anymore...what's next?.....@Jeff, have you tried nortriptyline?...it helped me when I started with my neuropatic pain a long time ago, I was on 50mg and Vicodin 2x500mg three times a day (tho I only used twice a day)...it doesn't help anymore, I just take norco 5mh 2x5mg, when my pain is to strong, especially my eye pain, I add half more to my dose of norco....sorry my friend, we have to learn to live with the pain, right? hugs ojo

I will have to ask my doc if I have tried nortriptyline … I probably have .

Miss Philicia · « **Reply #744 on:** January 30, 2015, 06:17:09 pm »

Nortriptyline was the first med my neurologist tried on me in combination with gabapentin. It did nothing for me except cause very severe dry mouth -- which I already have from two decades of lots of medication but this made it unbearable. I didn't last more than a month on it I think this past summer.

Wade · « **Reply #745 on:** January 31, 2015, 09:41:50 am »

Jeff....
I truly hope this works out for you
It's a gutsy thing your doing , but you always seem up for a challenge !
Wishing you the very best
Wade

Jeff G · « **Reply #746 on:** January 31, 2015, 10:00:47 am »

Quote from: bubba53 on January 31, 2015, 09:41:50 am

Jeff....
I truly hope this works out for you
It's a gutsy thing your doing , but you always seem up for a challenge !
Wishing you the very best
Wade

Thanks ... its actually going remarkably well as far as the taper goes and I am taking it in stride and even getting a little bit of sleep ... not much but a little . The pain is a separate issue and I will have to assess that when the tapering is not a factor .

wolfter · « **Reply #747 on:** January 31, 2015, 12:27:27 pm »

Accepting that Humana gets to make medical decisions for me instead of qualified medical professionals. They denied covering Boniva through both the initial denial and subsequent appeal. SOB's. My doctor explained that this has been my regular course of treatment and need to stay on it until my next bone scan.

So through the process, I opted for the every 6 month shot that will be administered in my doctor's office. She said they'd work on the preauth but quickly rec'd a call from the person in charge of billing. Since this is a medical procedure done in the office, it's actually billed straight to Medicare instead of Humana. HMMM..... At least it's covered I guess.

mitch777 · « **Reply #748 on:** January 31, 2015, 01:31:19 pm »

Quote from: wolfter on January 31, 2015, 12:27:27 pm

Accepting that Humana gets to make medical decisions for me instead of qualified medical professionals. They denied covering Boniva through both the initial denial and subsequent appeal. SOB's. My doctor explained that this has been my regular course of treatment and need to stay on it until my next bone scan.

So through the process, I opted for the every 6 month shot that will be administered in my doctor's office. She said they'd work on the preauth but quickly rec'd a call from the person in charge of billing. Since this is a medical procedure done in the office, it's actually billed straight to Medicare instead of Humana. HMMM..... At least it's covered I guess.

Greg,
Grrr...
Glad you at least got it covered. I'm wondering if you may not have those awful side effects with the shot as opposed to the pill. Even if you do it would only be twice a year.

m.

J.R.E. · « **Reply #749 on:** February 01, 2015, 10:27:19 am »

It's colonoscopy prep day !!

OH FUN !! The last one was five years ago. My last meal was a Sandwich, at 8:00 last night. ( Saturday))

According to the VA's Instructions for a colonoscopy, Nothing solid is to be eaten today ( Sunday ) . I can have clear broth/ bouillon and clear liquids during the day today, to remain hydrated.

The Golytely Solution, will start around 5:30 this afternoon, and will take between 3-5 hours to complete. If I remember rightly, the last time I did this I had the solution down pretty quickly.

I've got some gator aid/ apple juice/ white grape juice,.. to replenish myself during the early evening hours, and during the prep, and nothing by mouth after midnight. Colonoscopy is scheduled tomorrow morning at 9:00, we'll leave the house about 7:30 AM.

On the plus side, it's a beautiful day today, highs are going to be in the upper 70's, so that means we will take a swim and this afternoon at 2:00, and sit in the jacuzzi.

Then shortly after, all the fun begins !

These are the instructions from the VA. BOTTOMS UP

!. I'm going to mix the solution now an keep in the fridge until 5:30. It taste better cold.

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