Here I am once again...Meds Not Working!!!!

[Suda]

Dear Pain Mangement Group:

I apologize for only coming on this site when I need help, but I really, really, need your always and forever expert advice.  Besides, when I am not totaly desperate (sp?) I don't have enough energy to swat a gnat, much less come on here and tell you I'm feeling better, but I would love to be able to honestly do just that.

I have lupus, fibromyalgia, severe osteoporosis, and degenerative disc disease.

My doctor upped my MS-Contin (Morphine Sulfate) 30 mg. to three (3) times per day.  This I have been taking now for about three (3) to four (4) months, I forget.  Anyway, I'd hoped and prayed that this would alleviate most of my pain, and for a little bit of time it did.  That, of course along with still having to take four (4) percocets 10/325 mg. for breakthrough pain which I have had to take all four (4) everyday!

I'm going to see my doctor this Friday.  I am at a total loss.  I never have an ounce of energy to do even the smallest things.  Taking a shower can put me to bed for the rest of the day.  Going to see the doctor, even the idea of it exhausts me, and aftwards I am in bed laid up in agony for days afterwards.

My question here is what in the #$%$ should I do?  Should I explain to my doctor that even though at first this did seem to work, but not anymore?  I know I should at the least allow her to suggest something.   Besides, I am totally lost on any suggestions.  I did ask her once if I was some type of freak and she said "No, your body simply metabolizes medicine more quickly."

Any suggestions as to what I might try asking for, if anything, would be greatly appreciated.  Could it be that my body has already built up a tolerance for these medicines in this short of a time?

There is tons of stress in my home at this time, and it's been going on now for at least a year and a half, so I can't blame this extreme, and non-abating pain on that, or at least not on most of it.

Please help!!  I am feeling totally helpless and totally hopeless and it's getting to the point where I'm highly disappointed when I wake up at all anymore.

It's not that I'm depressed so much as that I am totally discouraged.  And, I also feel as if I am letting my doctor down because I know she is doing her best to help alleviate my pain.

I know I shall never, ever live without any pain, nor do I ever expect to do so, but most days now I have to contend with a pain level of 6-8 and that's probably what's exhausting me.

Sorry about this diatribe, but as always you are the experts I turn to when totally lost, which I am at this time!

Sincerely,

Suda

[Red931]

Good Luck with the blood tests. I do believe that it is the MSContin causing your fatigue as I stated earlier. If all turns out well with the blood work as I hope it will and you are not going to change medications you will have to find alternatives for energy.

Beetroot juice (believe it or not) works well to give you a little extra boost and is great for the liver. The meds may have your liver working overtime. I mix it with apple juice. I drink one cup a day but two is recommended and is fine for women because of the high iron content. I also suggest Milk Thistle one a day. You want to give your liver all the help you can.  

[Suda]

Dear Flower & Mellie,

It was a relief I must say to finally admit that it was way past time to go see a urologist.  I'd gone to one 20 years ago because I've always had this problem, just not to this degree and they did an operation where they enlarged my bladder with water to stretch it, but as soon as I awoke from the operation I began crying because I could tell it hadn't worked because I felt exactly as I always felt; as if my bladder was about to burst.

At first they said, "Oh, it simply that your bladder is irritated from the operation", but I somehow knew that wasn't the case at all, and of course, it wasn't.

I wasn't taking any medication back then at all because they hadn't found out yet that I had fibromyalgia and lupus.

So, I'm just writing to thank you all for talking with me about all this caca and wish me luck with the urologist.  I'll be calling on Monday to get in as soon as possible.

I would be like a miracle if I could do something totally bizarre, like take a nap when I felt I needed one and be able to without having to go to the loo one more time.

Anyway, at least I'm writing with updates which I've always been remiss in doing.

Again and again I say "Thank You All So Very, Very Much!!"

Big Hug and Best to You All,

Suda

[mellie4]

I hope you get to the bottom of all this.  Great idea on the doctor's part to get some blood work done.  A couple of years ago I was totally exhausted.  Everything was an effort, and I chalked it up to the narcotics.  Turned out (through routine blood work) that I had something else going on.  Something even as simple as being borderline anemic can bring on extreme fatigue.  Mine turned out to be some really strange, long-lasting virus ... at least that's what my primary determined in hindsight since they couldn't find a reason for my escalating white count, though no other symptoms other than the fatigue.

I've found that being on narcotics makes me feel like I have to urinate and then I find I can't go or only go a little.  Some narcotics have that as a side effect, but it's a good idea to find out if there's something else going on, maybe a UTI or something.

Keep us posted on what's going on.

[flower12345]

Hi Suda. I'm so sorry that you're feeling so awful. I'm glad that your doctor is running tests. That must be a relief. I haven't been posting often, but I read your posts.

Please keep us updated.

Hugs,

Flower

[Suda]

Dear Sarajmt and Red931,

I made it to the doctors and she even suggested that maybe the MS-Contin was making me feel so very weak and lathargic.

I was just too miserable today to "tap dance" as I shouldn't and know I shouldn't, yet still usually tend to do when seeing any of my doctors.  But today was different.  I was absolutely exhausted and in so much pain and the nice P.A. and the doctor also noticed that I was way past my normal "Oh yes I'm in pain, but alas, what to do, what to do?"  I was about to burst into tears actually and they absolutely knew that.

What everyone decided was that I would stay on these meds just as they are now, but take a ton of blood work so that they could find out what exactly was going on with my body because as my sweet doctor said "Something must really be going on for you to feel this miserable for this length of time.  Keep in mind I have lupus, fibromyalgia, degenerative disc disease and severe osteoporosis so they have a myriad of things to look into before we change any of the medicine.

I did say that I was very afraid of changing to a totally different pain medicine right now because I tend to have very servere adverse reactions when I have taken medicines that my body doesn't agree with me ingesting them.

Therefore; I will await about 3-4 more days to find out what, if anything at all is up with my body besides the usual.  If there is something extra going on physically we will work from there, and the same will be true if there is absolutely nothing unusual, except for the usual unusual of course.

I'm very lucky to have you all as a great and caring sounding board.  I'm also blessed with my doctor because she, her P.A., and all her staff are really extremely nice and very compassionate.

Also, one thing that I must do before I go to see my other doctors again, is to go to a urologist that she gave me the name of because one thing I've not mentioned is that on a normal day Ha!! I end up having to urinate at least twenty (20) if not (25-30) times and believe me when I tell you it's very difficult to try and have any type of life at all when it seems that every five (5) minutes I must go urinate!  Not much ever comes out, but it always feels as if my bladder is about to burst.

I've always had to urinate quite frequently even when I was younger and healthier, but I do believe that you would agree this amount of going has got to go!!!!  Ha, Ha, Ha!!

Anyway, once again I will apologize for my long posts, and once again I will thank all of you oh so very kind and caring people because what with all this craziness going on I don't know how I'd stay even half way sane if it weren't for all of you!  

Please know that I don't believe that anyone is actually "so-called sane", but by that I mean I think that most of us humans are harmless and the semi-fun type of crazy people thankfully.

Again, thank you, thank you, and thank you!!!!

Sincerely,

Suda

[Red931]

Much of your fatigue may be from the anxiety of associated with your condition. That is why you have a bad day on the day of your doctor visits. I used to have the same reaction because I knew I was going to be told I need more surgery.

If you feel the medications you are on are doing the job but need to be increased I am sure your doctor will address those concerns today. I do believe that an increase in the MSContin will increase your fatigue however. Then again, everyone is different and it may not for you.

Please let us know how you made out today at the doctor.

[Sarajmt]

HI Suda:  I"m sorry you had to bump your post because we weren't around.  Good luck to you today at your visit.  I've really nothing to add but just wanted to wish you the best.

[Suda]

Dear Red 931,

I tried to reply to your response yesterday but my "computer said no" and I gave up.

That being said, hopefully this time I can get my response to your kind reply this morn.  I am totally exhausted and am going in to see the doctor at 10 am today.

I always get stressed about seeing any doctor because having to get ready exhausts me and I never know how I am going to feel, and today I feel the same as I have been feeling for quite some time now level 8 on the pain scale and absolutely no energy.

I actually do some exercises (a little yoga, some pilates, and a bit of Qi-Gong (sp?)) and try to keep the house semi-straight and it does keep my mind off the pain while I'm straightening up, etc., but the aftermath is horrendous on most days.

I will discuss whether or not my doctor deems it proper to go up on one or two of my pain meds mg. wise or whatever she opts for.  As I have had no adverse reactions to these two so far I'd rather take that course of action because I have had some really severe reactions to quite a lot of medicines, and not all of them pain medicines.  Like "going into the hospital reactions" and being there for 3-4 days.

I did take oxycontin about 7 years ago at 10 mg. two per day for about three (3) years and they worked, but then my fear of the stigma kicked in and I switched back to vicodin 10/325 mg.

Thank you so very, very much for your input.  I appreciate the give and take on this forum so much.  As I've said many times, there is nodoby else I can turn to with whom I can discuss any of this.

Wish me luck and I send you and all the rest of our "living with/in/through pain group" all my best!

Sincerely,

Suda

[Red931]

I have been away from the site for sometime now but I am going to start posting again. It had nothing to do with anyone here. There are some good people here that all share our experiences battling the same problem, pain.

I have had multiple failed surgeries and experience chronic pain every waking moment so I will give you my advice on medications as I have been through a few.

You don't seem to have gotten much relief if any at all from the medications that you are currently taking so you should explain this to your doctor as you have been previously advised here. Since you are already experiencing severe fatigue I don't think the Fentanyl Patch will be for you. You may just need a change in one of the medications that you are taking or your doctor may want to try something totally different. Sometimes just a change in the compound of the medications helps. For instance the doctor may try Oxycontin instead of MSContin and Vicodin for the breakthrough pain instead of the Percocet. Some people respond better to the mixture of the Oxycodone and Hydrocodone for the breakthrough medication. I did, but unfortunately I had to come off the Vicodin because of the acetaminophen content. I also now take Percocet for the breakthrough with Oxycontin three times daily. You are never going to be 100% pain free. You have to learn to get it to a manageable level to function.

My experience with the fatigue is that you must do your best to try and do some type of activity to avoid getting into the rut you are in or it will get worse. I know it is difficult but you must work through the pain. Even if it takes a long time to do a simple task. It will be frustrating at first but then you get used to it and will be able to do more. Once you find that you can, (and believe me you will) you will do more and it will keep you mind off the pain because you are concentrating on the task. This also helps you to get more sleep at night. Once you find that there are some activities that you can still do and enjoy things will get better.

Talk to your doctor about a medication change. Good Luck and God Bless.

[Suda]

Dear Flower12345,

I will certainly talk to my doctor about how my pain doesn't seem to be easing up much at all anymore.

I do always take in a list, more like a tretise actually, but it's just for me not to forget anything, yet of course I still forget some things, just not the most important ones.

Why, oh why is it so very difficult to talk about pain in this country?  Or maybe what I really mean is why is it so very difficult to admit that one is still in a considerable amount of pain, but on meds that most people would be aghast at if one were to tell them what those pain meds are.

Of course, if I've learned anything through all these years, and it took years to learn this; I don't tell anyone what types of pain meds I'm on anymore.  The only people I share that info with is you on this site and one of my best friends who has chronic back pain and can totally relate.

So, I thank you very much for taking the time to reply to my query.  It really helps just knowing you guys are out there and I have someone to discuss this with, without feeling judged.

Thank you again!

Sincerely,

Suda

[Suda]

Dear Mellie4,

Thank you so much for your input.  It was very helpful, especially because you told me you have, at times felt as if you were letting your doctors down also.  

As with you, my doctor never acts as if I am doing so, it's all me.

It's just so very frustrating, and confusing when I think "oh, well this seems to be working and then within what I feel is a very short period of time, I'm having more pain and I'd just taken my meds a couple of hours before.

So, again, thank you so much!  Your comments were very helpful.  As I've said I'm all alone in this as I must live with my sister's boyfriend (her house) and he's such a total loser and is always commenting about maybe I could spare some pain pills, since he's positive that I'm not in any pain whatsoever, much less chronic pain, whereas he is in pain.

One would think what with him smoking pot and drinking beer from the time he awakens only to lie in bed all day, every day watching the telly, until the end of the day when he usually passes out would preclude him for even needing anything more.....but, he just want's to get high, and he also wants to tick me off, which he does.  That's the only thing he ever does too.  No job, never had one, just moved in and let's my sister support him and buy him everything his black heart desires.

Well, since they are barely working for me, NO!  And even if they were working wonderfully, still, NO, NO, and a thousand times NO!

Thanks again!

Sincerely,

Suda

[flower12345]

Hi. I'm having a hard time with my medications too, so I don't have great advice right now. But, I would definitely tell your doctor exactly what's going on. Write it down if that will help you remember. I get nervous at doctor's appts., so sometimes it helps to write things down. Write what your pain levels have been, what your goals are, etc. That may help you to communicate to her.

I'm so sorry that you're having such high pain levels.

Hugs,

Flower

[mellie4]

I'm not sure how much help I'll be.  I've had a lot of problems with finding the right medications and we've changed them often, sometimes within the same month or even less. I've been lucky my pain management team is really working with me and wants to find what works best for the pain with the least side effects.  We've tried different meds, different dosages of the same meds, taking it at a different time or in a different way.  In the end, we went back to my original breakthrough medication but at a higher dose and taking it regularly, every 4 hours, rather than as needed.  My long-acting pain med is the Duragesic patch.  Even though my pain level is still a lot higher than I'd like, I feel like this is the best we can get at the moment.

I have often felt like I'm "letting the doctor down."  Especially my surgeon.  I feel like I'm failing them, though they really don't do anything to make me feel like that.

I have several different pain conditions, osteoarthritis, fibromyalgia, herniated disk, though it's the arthritis that's giving me a run for my money pain-wise.

Stress can definitely add to pain, but I think someone in your situation, where the stress has been there a while, that's not the likely reason.  This is my own personal opinion, based on my own experience.  I had tremendous stress in my life for years (and still do, though a different type.)  I think when you have that kind of long-term chronic stress that (unfortunately) becomes your new normal.  At least that's how it works with me..

The only advice I'd have for you when you see the doctor tomorrow be honest about all your feelings.  I've had times where every little thing set me back and I'd be totally exhausted.  Every tiny thing I do at times takes up my energy and I find I'm junk for days on end only able to do the bare minimum.

Sorry I have no real suggestions.  Just lots of empathy.  Hope it works out okay.  Please post as to how everything goes.

[Suda]

Dear Group,

I posted this yesterday and I've gotten no responses at all!  Where is everyone?  My doctor's appointment is tomorrow now and I am becoming desperate (sp?) for some type of help with my questions.

Please help!  You have always been there for me before and I don't have anyone else to discuss this problem with.

Sincerely,

Suda