Am I someone AP just doesn’t work for?

[DiamondTNT]

Hi everybody,
First, I have no tumors. I’m just an old lady with Sjogrens and RA causing additional symptoms that hurt.
Biaxin is still causing herxes. I do need to use the clindy IVs I have, maybe next week.
Still slowly going downhill. The pain is no where close to under control. Some days I use Advil, some days I use Ibuprofen, not much difference other than the number of pills I take… I think Ibuprofen works a little better.
Slowly weaning on the hydromorphone. It’s the only pain control med that doesn’t mess up my head though. I absolutely cannot stand the others I’ve tried. I’ll use 2, 4, 6 or 8 mg, usually letting it dissolve under my tongue, when the pain get really harsh. Now I’m trying to use less and just tough through.
Reality is, I’m exhausted and depressed plus, my husband is NO help as he’s angry all the time because I’m not the person he married. Can’t afford much more than what I’m doing now; been denied any help through the government agencies and even if they were to accept me, they would insist on putting me on the biologics. My hands, ankles, knees, jaws, elbows are getting worse with a little more swelling and pain, my teeth are being moved. It’s harder for me to grasp things and I’m always afraid of falling as my ankles and knees are now so weak. I don’t respond here much because I don’t want to be negative but, there isn’t much for me to be positive about now. I would like to be tested using IgeneX for the additional co-infections but, can’t afford it and the USA healthcare system is in turmoil. Our lifestyle, living in a motorhome and moving to a different campground every 2-3 weeks makes getting health care a little more difficult but, I absolutely love this part of my life.
Maybe I’ll try seeing Dr R again and see if we can make things a little better. The drive to his office isn’t far from 2 of the campgrounds we’re using this winter. I’M NOT GIVING UP! Even got a new rescue dog and she does help me keep going, I can’t let her down.

[DiamondTNT]

I’ve read through all the posts on this thread again. Just added back the advil or iboprofen the past few days as I try getting off hydromorphone. It just seems that nothing helps much. Husband is so working against me on any diet change and keeps bringing candies home for me, even though I don’t eat them often, he is a ‘pusher’.
I will have to start doing my own shopping for the right foods and my own cooking, with or without him.
Thank you, again, EVERYBODY here! This place really is why I keep trying.

[Maz]

@DiamondTNT wrote:

Still slowly going downhill. The pain is no where close to under control. Some days I use Advil, some days I use Ibuprofen, not much difference other than the number of pills I take… I think Ibuprofen works a little better.
Slowly weaning on the hydromorphone. It’s the only pain control med that doesn’t mess up my head though. I absolutely cannot stand the others I’ve tried. I’ll use 2, 4, 6 or 8 mg, usually letting it dissolve under my tongue, when the pain get really harsh. Now I’m trying to use less and just tough through. Reality is, I’m exhausted and depressed plus

Hiya Diamond,

Unfortunately, the hydromorphone is a pretty nasty drug, causing dependence and all the difficult withdrawal side-effects during tapering that you’re describing. It could be why you are feeling that this is “the only pain control med that doesn’t mess up your head,” because when it’s taken, it masks the withdrawal symptoms that are experienced from rebound when trying to replace it with other pain meds. A bit of a vicious cycle really. The trouble is, it’s not likely that you will really know what is helping with your AP or not until you can eliminate the hydromorphone and there is a clean slate, without the “swings and roundabouts” that this drug causes – the low from rebound pain when withdrawing and the highs of euphoria when taking it.

Above all, be kind to yourself and try not to beat yourself up…these rheumatic diseases are very painful and you’re an old-timer on AP and know it’s a slow road anyway. One of the pitfalls of chronic pain is that it can lead anyone down the rocky road of self-managing pain and, sometimes, well-meaning doctors provide prescriptions that promote dependence to some very harsh drugs. Dependence shouldn’t be confused with addiction, but it does produce similar/same outcomes.

To get completely off the hydromorphone safely, it is recommended on most sites that deal with this issue, to build a strong support network, including an informed medical professional who can help with safe tapering and also to seek out a support group who understands the nature of chronic pain and dependence.

There are a number of organizations that can help with methods for safely tapering off hydromorphone and I can send a couple to you in a PM, but it would be ideal if you could get to a pain management specialist who can help you to get off hydromorphone safely – perhaps prescribing an alternative to hydromorphone – so that you don’t have to go through the intense depression, painful muscles and body cramps, etc., that withdrawal can cause. There are specific detox programs for opiate dependence that are recommended.

Once you can get a clear playing field, it will be so much easier to formulate a good antibiotic protocol and feel hopeful that Dr. S. would help freely to get you on track again. It might not be a bad idea to write to him now to see if he can offer any insight on what you’re facing, Diamond. He’s so kind to answer email and phone calls from rheumatic patients.

In the meantime, no doubt we all will be keeping you in our thoughts! Hang in there!

[DiamondTNT]

No antibiotics for a week now and feeling so much better I’m amazed!
Antibiotic induced Lupus seems to be a real possible culprit now.
I will see FL Dr soon. Now I rarely feel the need for pain meds. Until Dr says otherwise I will take vitamins/minerals, prednisone, Ibuprofen or Aleve, and continue to lower the amount of hydromorphone.
Can’t thank you all so much, again! Especially Maz!!!!!

[Author]

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