meds? do they really work. a sunny day and I'm feeling blue

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catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 3/28/2010 10:24 AM (GMT -7)   
I take lyrica and topomax and norco and ambien and opana and for pain ( and a slew of others for other issues) but I just don't feel any better. I just wonder if anyone else feels the same. Does anyone else feel like you are pouring all these pills into your body day after day not knowing what the long term effect is going to be and wondering why? Do you really feel any better?When I look at the list of all the pills I have tried, and the side effects that have been warned about them all, and then I realize I have checked a "yes" on the organ donor box in case of my death I wonder, would anyone really want mine? I don't know, maybe I'm in a bad mood today. The sun is shining. My husband just told me thats' suppose to be in the 70's this week. In the old days,BP(before pain) I would love it. Now, as soon as the weather changes I know I will be confined to bed as any change in temp or barometric pressure causes intense pain and I have to hide inside with my ice packs and my narcotics trying to convince myself they are helping. I'm not even sure what my question was. I guess I just needed to talk. Thanks for lending an ear.
Catahoula
sick and tired of being sick and tired


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 3/28/2010 10:45 AM (GMT -7)   
Catahoula

I think we all have days like what you are describing, and sometimes it does get frustrating, but at least we do have this forum to come to, and vent our frustrations to, and know that there are others that are listening! In some small measure that does seem to help!

White Beard

pete81241
Regular Member


Date Joined Mar 2010
Total Posts : 73
   Posted 3/28/2010 10:51 AM (GMT -7)   
hi catahoula
sorry youre struggling. i know what you mean about side affects. for me the neuronton was the worst as far as problems. my memory went and my legs swelled. i kept asking the dr why are my legs swollen. he didnt have an answer and he kept me on the foolish stuff for 5 years until i did my own research and then stopped the stuff. and narcotics are a real treat. they give me bad dreams and make me depressed. i love the sun and wish we had some up here in mass. 15'' of flood waters are now in my basement. anyway a good scream sometimes hepls so heres mine.....ooooouuuuuccchhhhheeeesssss....now you can scream at me.....pete

Pottel
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 3/28/2010 12:08 PM (GMT -7)   
Catahoula -
 
I know so well how you feel. Before I was rear-ended in 2002, my husband and I would kayak just about every weekend. Now, I'm doing well to get from the bedroom to the kitchen and stand up long enough to start a pot of coffee. The weather does me the same way as you: whenever a low pressure system is moving in, I can feel at least 48 hours beforehand. Ugh! And Yes! I still get the blues, especially when I compare myself to average people who don't have to deal with pain, pills, and whether they need the hot pack, cold pack, or TENS unit this time.
 
It took me a long time to accept that, for better or worse, this is my reality. To combat the depressing mind games I play with myself, I work very hard to hide the fact that I'm in pain all the time. It makes me feel better to know that my regular cashier at the grocery store and the servers at our favorite restaurant have no idea that I'm anything other "normal." It's my way of telling the pain, "Ha! Take that! I'm the one in charge here, not you! I can function normally despite your best efforts!"
 
I'd like to suggest that on warm, sunny days you go sit outside for as long as you feel you can; even a few minutes will do you some good. The sunshine on your skin will warm your bones. I find that if I close my eyes I can almost transport myself back to when I was 18 and spending all my free days at the beach.
 
Baby steps. Small challenges at first. Once you get through a few, you'll begin to feel better about yourself and the blues won't hit you as hard.
 
I sincerely hope this helps, C.
Elin

HNP: C6/7 left
Bulges: T8/9; T9/10; T10/11; L5/S1
ACDF C4/5 right 05/2008
PTDJS right ankle
 
"What does not destroy me makes me stronger." - Friedrich Nietzsche


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13470
   Posted 3/28/2010 4:41 PM (GMT -7)   
Hi Catahoula,
 
You are in a bad slump right now and we all get there at some time or another. I can't count the times I have sat and looked ay my long list of medications and thought to myself, ok which ones can I cut out. Last count I was at 19 pills a day, I decided to quit counting, what is the point of counting what we take it a day, it sure isn't productive.  This does not count the meds in my pump or my shots every two weeks for Crohns disease. If I stop any of my meds then I am going to end up very sick, they are just detrimental to my well being. I will admit to being stupid enough to stopping my medications in the past and ended sick and in the hospital, not worth it. Look at it as one more tool in trying to be healthy. I would give anything to go back to the days of BP medicines only, but that just ain't going to happen. I was a healthy person then with few medical problems. Not that person anymore.
 
I do get outside as much as I can especially on sunny days. I can't stand being cooped up in a house. The warm sun on my old bones really feels good. In fact they suggest for the folks up north that have short days and not a lot of sunshine to get out in it at least 30 minutes a day. The sun will help your vitamin D levels. My 4  year old grandson was dropped off Saturday morning at my house. I was out front with a cup of coffee and was pulling weeds. We both had our lawn chairs out in the yard and we were sitting in the sun. He said to me "granny how come you like sitting in the sun, don't you want to go inside?" I said no, I do not want to go inside, granny likes being out here in the warm sunshine. He said well "granny the sun will give you some vitamin D". I thought that was pretty good rolling off the lips of a 4 year old, lol.   
 
I suspect a lot of your problems is from pain being under treated. If your pain medication  is not working then it makes life rough. I have been on both sides of that fence. Under treated pain can bring on many different faces of other problems. My pain is now under control the best it has ever been. I feel very fortunate to have a PM dr that understands this too. None of us want to be on medication but when it means some quality life I am in.
 
I hope you get to feeling better.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 3/29/2010 4:51 AM (GMT -7)   
Hey I here you catahoula , I know how you feel , I absoloutley hate taking medication ! Pills , pills ,pills ! I hate them ! And your right I do wonder about long term effects , no one knows over time what taking these meds in the particular combination we take them can have on us , as if we didn'y have to deal with , right ? I cut down from 6 oxicontin a day to 1 or at most 2 a day .I tale celebrex now at least its anti-inflammatory so it does something to help my condition , while oxi simply covers up pain , same with percocet , i quit that , i took 2 last week and thats it for the week and I won't start again .I bought a juicer i'm taking vitiamins and eating and drinking only fruits and veggies , trying to feed my body as it was meant to be fed .With natural foods that have no hormones or steroids or preserving agents or foreign chemicals . I just strted this and i'll let you know how it works for me.But i'm eager to see how I feel after a month of natural consuming .Even if it doesn't fix things I know its good for me and my body should respond in a positive way .
HIV+ also Hep c , need hip replacement surgery on hold because of unknown but cellulitus-like ailment  .most pain from hip condition and cellulitus-like ailment .hands numb may have carpal tunnel syndrome now . Great frustration because doctors unable to diagnos ailment              .Medecines -   Celelbrex ,viracept,truvada, lasix .    '                                                                                                                         


Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 3/29/2010 7:15 AM (GMT -7)   
Straydog,

You mention 'undertreated' and 'overtreated' (both sides of that fence) but then only address undertreated.

I just got off a whale of 'overtreated' mess. So bad they were talking about taking my driving license away. I'm being treated for pain with morphine, methadone, lyrica and a couple of others, but no one thought to look at my meds as a possible source of the issues I was facing.

They were much more suited to calling me crazy and throwing away the key. Then after a few months of this, one of the geniuses decides to take a wider look and voila, there it is!

Now I can think, I have coordination back (did I mention I was running into walls?), I can express myself (not 100% back on this one).

Which is worse, under-medicated or over-medicated?

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 3/29/2010 11:13 AM (GMT -7)   
Catahoula,

I cannot express how much I hope you are able to find help for this feeling. I'm afraid that you may need some fresh eyes in the medical field to find out why you still feel so bad. Perhaps some of your meds are conflicting with each other or perhaps they are just the wrong ones.

I will keep you in my prayers.



Tony, not to jump into Catahoula's thread, but you have a very valid point on the over-medication and the under-medication. I think they are both a very serious problem and should both be considered. I really can't say which is worse, but I have seen both and both can be horrible. I'm glad you have been able to overcome the trials of too many meds. It's wonderful when your mind comes back and you can "see" things clearly again! Addressing my HGH deficiency did that for me.


Best to you!
Formerly PrayingForRealRelief...
 
DDD, CHRONIC PAIN SYNDROME, TLIF L5-S1 2009 (failed), FIBRO, MINEYER'S (SP?), VERTIGO, MIGRAINES, GERD, SLEEP DISORDER, NISSEN FUNDOPLICATION (failed), DEPRESSION, EXTREME ANXIETY DISORDER, OCPD, PTSD, CHRONIC MUSCLE SPASMS, HUMAN GROWTH HORMONE DEFICIENCY, VITAMIN D DEFICIENCY, CARPLE TUNNEL SYNDROME, EXTREME IDIOPATHIC HYPOGLYCEMIA FROM AGE 12
 
 
 
 


catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 3/29/2010 6:11 PM (GMT -7)   
Retiredmom et al-
feel free to "jump into my thread" at any time. I truly believe over medicating is just as bad as under medicating. As a caseworker I saw it so often. People turned into zombies because it made it eaiser for staff to handle them. I truly believe I am in the under medicating column right now. Too little of too many meds. That was primarily the reason I sought out a new pain doc. My old doc, who I have been seeing for 5 years now is just not aggressive enough with meds. His concern , or so he says is that I will get immune to the meds. He gives the exact limit and no more and after nine years, the "book limit" just doesn't work anymore. This is a big problem I am finding and one of the reasons I have decided that I will not have any more surgeries or procedures. I had to have a colonoscopy last year and because I was wearing a duragesic patch at the time, the doctor would not give enough to put me out. I FELT EVERYTHING...and I mean everything during that procedure. The same was true when I had the trial implant of the occipital nerve stimulator this past May. It was a horrific ordeal. I have yet to find a doc who actually offers any pain control.
Now that the season is changing and its begining to get warm I know whats coming. I know how my head pain increase with the change in temp. I know I will not be able to go out and enjoy it and that is the one thing I long for. To be able to go out and garden, or sit on the deck and read a book, heck, even to be able to go out and clean up after the dog would be a dream come true. After nine years I know exactly what is going to happen. Its not negative thinking, its just fact. I just wish I could be positive, I wish I could look forward to spring and summer again buts once again I'm just fearing the amount of pain I know will come.
I go see the new pain doc on Wednesday for my second appointment with her. I have been going to the physical therapy she ordered. I wish I could say its helped. She wants to do a nerve block at C1, which is new for me as all the previous blocks have been in my head but I'm going to go ahead with it. I'm nervous about brining up the issue of medication with her as if I do that will mean the contract I signed with my old doc will end if she agrees to take over the medication aspect of treatment. If she has no new ideas, then what? I hate being negative when I know only being positive helps but boy its hard. Its all so hard. Thank you all for listening. It helps to have a place where its safe to "rant"
Cata(houla)
sick and tired of being sick and tired


Pottel
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 3/29/2010 6:18 PM (GMT -7)   
Catahoula -
 
Can you just get an "estimate" from her without voiding your old contract?  I would think she should be able to at least discuss PM and allay your fears before asking for a commitment.
 
Elin
HNP: C6/7 left
Bulges: T8/9; T9/10; T10/11; L5/S1
ACDF C4/5 right 05/2008
PTDJS right ankle
 
"What does not destroy me makes me stronger." - Friedrich Nietzsche


catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 3/30/2010 2:51 PM (GMT -7)   
well..we'll find out tomorrow. I hope so.
catahoula
sick and tired of being sick and tired


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13470
   Posted 3/31/2010 10:13 PM (GMT -7)   
Catahoula, you are are so right about the over-medicated thing. Did your current PM dr refer you to the PM dr you are seeing now? Is the plan for her to take over your care or what? I sure wouldn't want to be running back & forth between the two of them, that would be just too much much, lol. It is hard enough going to one. Hopefully this new one can offer up some help, obviously your old dr is one of those that once his head gets stuck in the sand thats it. I know you respect him & all, but that is not giving you any quality life and that is not fair to you either. Sometimes we have to make decisions about our health we don't always like but if it gives us a better return then its well worth it. Let us know how it goes. Take care.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 4/1/2010 6:54 AM (GMT -7)   
Old pain doc did not reccomend a new doc, instead he told me to go to Johns Hopkins as he was out of ideas. I decided to come back home to the suburbs and get in to see a doc I have heard about but never been able to get into due to insurance issues. Now that Medicare is primary I can pretty much go where I want if I can get in. I went again yesterday and she did 7 ( count them 7) trigger point injection all along my shoulders, and up the side of my neck on the right side and directly on the right side of my head near me ear where I have always stated there has been pain but always been told there was no site to inject. ( hmmm.....interesting) I also asked her about the PT I had been receiving with the electronic gizmos and such and she was suprised that I had not received any "hands on deep tissue massage". I told her that the therapist had not touched me once in the 4 weeks I went but only used these gadgets and gizmos. She was not pleased She also stated it wasn't her direction to stop the diet sode with the phenylalalane( sp. sorry), said it can't hurt to quit but certainly wasn't going to kill me and she enjoyed a diet pop herself. Needless to say, I got an order to go to a therapy site 5 minutes from my home ( the other was a 22 miles drive each way) and they were able to get me right in. I had my first deep tissue massage and BOY did that woman have strong fingers. I had a terrible night, and very sore. Woke up in severe pain at 2 and haven't been able to get back to sllep yet and the Norco sure isn't cutting it. I can't say that either the injection or the massage had anything to do with it or not as it was also 80 degrees for the first time yesterday and warm weather always reeks havoc with my head. Could have been one or all 3 or none of the above. These injection and PT may do absolutely nothing for my head but my back feels wonderful. Its only been one day so I am game for more.
Doc was willing to wite scripts but did not want to do any med changes until we seem if injections do anything.
I have called and left messages with my old pain docs office 4 times now trying to get an appointment . Their message is to leave your number and they will return the call at their earliest convienence. I guess after 2 weeks it has still not been convient for them to return my call. This is one of the primary reasons I am looking for change. Last time I called in for a med refill they called in the wrong refill of 120 tabs. I get 180 per month. I called and left a message, could they call the pharmacy to dispense the extra 60 tablets. Again I get a message, no they can't do that, just let them know when I run out and they'll call in a new prescription. I called back but again got the old "leave a message". If you can't talk to an actual person, how can I make sure they will call the right one in this time???I've signed a contract with this doc. I can't seem to get an appointment to get in to tell him whats going on ( he still has to have a connection with me, he implanted my stimulator and even the new pain doc says she does not "service" them so no matter what I have to have some long term connection with him)
Anyway, the new pain docs' office is suppose to call today to see how I am after the injections so at least I can check in with them about the intense pain and what I can do until it settles down. I will try again to get an appointment with the old doc but the message has to be left today because they are closed tomorrow... Sometimes ya just want to knock your head into a wall....but it hurts so bad already....;O(

cata(houla
sick and tired of being sick and tired


catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 4/1/2010 10:25 AM (GMT -7)   
i can't believe it. The nurse from the "new pain doc" actually did call me today to see how I was doing after yesterdays injections. This may seem strange to some but this is the first time this has ever happened. Whenever I had any procedure done at the "major medical center", I NEVER had anyone check on me at any time in the past 5 years. For simple trigger point injections I was taken into a procedure room, asked to put on a gown, had the area sterilized, monitors attached and then the doctor went ahead with two techs on hand checking to make sure I was ok. Then I was wheeled into a room where they applied heat and monitors and a tens unit to make sure the steroids absorbed and came to check on me. And they said they would call today, AND ACTUALLY DID. I know I sound shocked but you have to understand, when I would have the nerve blocks at the other place I would "hop up on the table" hold my hair up so he could see the back of my neck, they'd wash it with a little alcohol and in would go the needles and off I would go home..Wham, bam thank you mam, see you in 4 weeks ( thats if they returned my call to make an appointment). Even when I had the surgeries and implants, never, never , never did anyone call to see how I was the next day. I just thought that was standard operating procedure.
This is all so new to me. What is it they say about the definition of insanity? You do the same thing the same way and keep expecting different results? All these 5 years I was going someplace hoping to feel like someone cared, that I didn't feel like I was a drug addict if I said I wasn't getting proper pain control, as though I needed to behave so the good doctor would treat me with some respect and all along it was right here 5 minutes from home. I am so keeping my fingers crossed that this all works out.
I wish you all a pain free day
Cata(houla)
sick and tired of being sick and tired

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