TROUBLE GETTING MOTIVATED...

Derwood:
I would not hold your breath that your first rheumatology appointment with assign you with a concrete diagnosis. Your rheumatologist will likely order specific blood work that is better interpreted by a rheumatologist . . . ANA and RNA, for example. The rheumatologist will look for antigens in your blood that can point to different rheumatic or auto-immune disorders.

But with your initial consultation you will be working toward a diagnosis. I know that I always feel better as I begin to have a plan in place.

The waiting time for an initial consultation here in Portland, Ore with a good rheumatologist is 4-5 months; the wait time for a reputable endocrinologist is 6-7 months.

I am glad that you shared the greeting of a smile with a stranger today. Who knows, maybe that person, too, needed a gentle lift in spirit and your smile provided just the inspiration that he needed to have a better day.

I adhere to a basic principle of showing simple kindness to others. Most people are hurting in some way. If not in physical pain, in emotional pain. It behooves all of us to be kind to each other.

Sending warm chin rubs to Lupin and a smile to you,
- Karen and tea-cup Maltese Molly

Seashell , thanks for the rhueatologist info. I am glad to learn as much as I can about my condition , and seeing this doctor is going to be important. I have a much better idea of what to expect now. I am at least happy that these doctors sound thorough (?).

So I will require more than one visit. I can deal with that. Do you suppose that once I start seeing he/her I will have to wait much time before seeing he/she again? I ask because my initial wait has been soooo long. Hope you and Molly are well today :)

Chartreux , thanks for confirming the advice Seashell has given. Yes , my wait has been a long one , and still about 6 more months
to wait. Thanks for rant opening too. May feel like doing that some day...glad to hear that it is OK to let off a bit of steam if neaded :)
Healing Well really is a great forum. Great people.

I am sure I would likely melt if I was exposed to the heat and humidity of Texas. It must zap a persons energy at times? Here it has been colder than usual lately. This week has been cloudy , wet and cold. Temperatures in the high 50's F or low 60's. But I notice that Friday is supposed to reach 78 F , so that is much more like normal for this time of year. Our humidity gets to be a problem in mid July till about the end of August.

Tourism is quite big here , and the visitors are starting to arrive. We have a total population of ~ 145,000 residents on PEI , and we usually get over a million visitors from late June till about the end of
October. It gets busy , and traffic slows things down , but I think everyone enjoys it. I know I do.

Thanks for shareing , and I pass wishes of a happy , peaceful day to all. Oh , and Lupin says high too.

Derwood.

I am having problems doing stuff because I am angry and disgusted with more or less everything. Seems like endless chores and I feel quite tired.

I have been on the 50 mcg/h Fentanyl for 3 days now. I am a bit surprised that I don't feel any different. I was hopeing for more relief , but I think I have to get used to some degree of soreness most of the time ( just as was suggested in many replies that I recieved over the last month.

Hi Rick , and thanks for the welcome :)
I find it strange that I don't feel better on the larger dose ( same manufacturer ) of fentanyl too. Maybe I overdid things on the weekend ( took my cat camping ) and will feel better in a few days ,
or more likely I am just going to have to live with the aches.

I do agree that it is difficult to remember how good we used to feel. But I also agree that it is best to move on with our lives like you have with the guitar. I am looking for something to fill the void too, and I think I will find something rewarding to do as long as I keep looking.

Thanks very much for the kind words and encouragement.

Derwood.

Re: F patch.. My personal experience is that will take days, maybe a couple of weeks, to feel difference in increased dosage. Please be mindful re:the consequences of higher body temps.. Even more important w/higher dosage.
F patch have given me great relief BUT I still feel pain 24/7.. Now I can also feel hope & look forward to the future, which, without it I was having a lot of trouble doing.

Good luck!

Derwood anything that can increase your body temperature, such as a hot shower, hot bath, getting too hot while outside can possibly cause the patch to release too much medication. Its a 72 hour patch & if it releases too much medication you can be short on it lasting the full 72 hours. They usually have this listed on the insert with the patches.

Take care.

Derwood321:
I am grateful that you have a caring and responsive physician who is attentive to you, listens to you, and acts on your behalf.

I have been on the Fentanyl patch (50 mcg) + breakthrough dilaudid (8 mg) for sometime and have learned some things through personal experience that might be helpful for you.

1. My sense is that will need to change your expectations regarding the role of narcotics and pain medication.

The goal of a prescribed narcotic is not complete, 100% pain relief. That is too lofty of a goal and it is unrealistic. It would not serve you well, in the long-term, to be 100% pain free as your narcotic tolerance would become too high at higher prescribed doses with serious secondary effects.

The better orientation is to find a place mentally and spiritually where you can accept an ongoing level of pain.

The goal of my narcotic prescriptions is to make my experience of pain tolerable so that I can live a life with some quality and some semblance of a normal life. So that I can be engaged with family and friends. So that I can be engaged in a hobby or volunteer work that give me a sense of intrinsic self worth.

2. The higher Fentanyl dose, while helpful in reducing your pain burden, may have its own downside(s).

For me, when I went from 25 mcg to 50 mcg what I experienced was a higher tolerance that did not serve me well. What do I mean? When I tried to wean down on the dosage from 50 mcg to 25 mcg Fenanyl, I experienced serious withdrawal symptoms - so serious that I had to be hospitalized for 3 days.

I thought that my breakthrough dilauded would be sufficient when reducing from 50 to 25 mcg Fentanyl, but no. My breakthrough medication was not sufficient to ward off withdrawal symptoms.

Bottom Line: Take each upward titration with Fentanyl with thoughtful consideration.

3. Fentanyl patch delivery is affected by temperature.
When it is hot outside, I know that I am receiving more medication from the patch then it is intended to delivery. I take care to stay in cooler, inside environments when the outside temperature is hot (75 degrees or more).

The patch is typically prescribed for 3 days/72 hours. Some people experience less efficacy of the patch during the last day/final 24 hours. My Fentanyl patch if prescribed for 2 days/48 hours. This requires pre-authorization from my insurance company for a 48 hour/2 day prescription.

Bottom Line: You may find the Fentanyl patch to be less effective during the final 3rd day.

4. More narcotic medication is not necessarily the best prescription.
Look for ways to ease your pain that is not dependent on a narcotic. Anyone with chronic, long-standing pain will encourage you to do so.

The mind-body connection is real. Find ways to find a place mentally where you can place yourself to less acutely sense your real physical pain.

For me, watching a NetFlix movie (the series House of Cards or Homeland are both exceptional movie series); sitting in a park and merely watching the birds, small animals, and plants; needle point projects that I work, I always have one project ongoing; 500 piece jig saw puzzles; cross word puzzles; reading simple prayer passages.

I realize that I will be in pain, at some level, for the remainder of my life. It is not an easy acceptance. Some days I have a less than good day and sink my head into the sand like an ostrich, despondent. Other days I experience a good day and can renew my personal batteries.

All to say . . . we are here for you. Let us know how we can help you the best, from afar. What do you need the most from those of us on this discussion board?

I hope that today is a good day for you,
- Karen -

Derwood:
You have a consultation with a rheumatologist still awaiting you. That visit and evaluation may provide other avenues to address your joint pain, depending on the differential diagnosis.

If you are found to have rheumatoid arthritis, for example, there are biologic medications that you can consider (Huimera; Remicade) as well as methotrexate. There are also glucocoritcosteroids (prednisone; dexamethasone) that can be used to dampen inflammation.

So . . . keep alive a filament of hope that there will be other treatment options available to you.

I recently saw a physician who is doing pioneer work in using amniotic cord cells in an injectable matrix, injecting the cells into joint spaces (hip, knee, vertebral foramen). Amniotic cells are considered primordial cells. They are unspecialized cells - cells that have not yet differentiated into muscle cells or bone cells or cartilage cells or brain cells or any number of specialized cells.

I have had the procedure, injecting amniotic cord cells into my hip joint space. Time will tell if it can help stimulate cartilage and/or bone resurfacing in my hip. Fingers crossed.

This physician's work is amazing. You can read about him and his ideology here:

www.restorepdx.com


You have mention that you walk with a cane.

Have you considered purchasing a 4 wheeled walker - sometimes called a rollator.

I use a 4 wheeled walker and find it superior to a front-wheeled walker. A 4 wheeled walker more normally approximates the natural cadence and step sequencing of normal walking. The front wheels pivot as well as roll forward/backward.

Just wanted to give you some ideas to hold onto.
- Karen -