Bad patient!

General
1

Hi everyone,

Just want to share some thoughts regarding the role of stress and some of its manifestations with PSA and other disorders. Bear with me, this isn't meant to be whining, there is a point to it!

I haven't been on the site for many weeks. Been distracted by having to move out of our home (months before closing date) to accommodate the buyers desire to quickly come in and bash our house to bits on closing day. My parents built it with their own hands after WW II.

Can't begin the process of negotiating on a new place until we have cash in hand because our credit was ruined by Citi during the bailout. We had a Mastercard account for 25 years, used as a revolving credit line for business only. Never missed a payment...so what did they do? Raised the interest rate from something like 14.9% to 30% overnight! Short story, we defaulted. Last year, after working side by side for 20 years in our very small business, my wife took on a full time crappy job to help us meet our obligations.

Several years ago we moved my wife's parents to the Cape so we'd be able to check in on them regularly. Her dad had a knee replaced 3 years ago which relieved pain, but his mind was affected by the anesthesia. He insisted on having the other knee done, and because of dementia issues was unable to walk afterward. Had to get rid of his assets so he'd me eligible for medicare. He'd been stuck in a nursing home for the last 2 years, in and out of e-room all through the holidays since Thanksgiving. He passed away suddenly last Monday.

Not going to bore you with all the rest, my point is that my little family has been under a prolonged period of stress.In retrospect I have realized that virtually all of my medical issues over the years have one thing in common...INFLAMMATION. Twenty five years ago I had to have a large portion of one lung removed. I had experienced a prolonged episode of INFLAMMATION in the lung which caused scarring and other nasty problems. Also had bouts of chronic sinusitis, ulner nerve (elbow) pain. Had a surgeon strongly pushing me to have rotator cuff surgery 2 years ago. I said, "Not for me!" In late September my right hand swelled up like a baseball glove, fingers all twisted and pain like I'd hit each finger with a hammer a few times. My doc sent me to the Rheumy who insisted I needed to go on MTX right away. I said, "Not for me!" My biggest health fear is contracting pneumonia, and my "over active" immune system has served me quite well for the last 25 years, why on Earth would I consider compromising it?

Finally, just in the last week I did get a bad sinus infection. Interestingly, the swelling in my hand almost disappeared! I think all those over active bad guys causing the INFLAMMATION in my hand moved to my sinuses!

I've done acupuncture, gone gluten free, drastically reduced dairy, taken milk thistle, fish oil, and vitamins since October. Even though it hurts like stink, I exercise and stretch my fingers all day long "use it or lose it" is my mantra. My hand still hurts and fingers are still slightly twisted, but I am no worse, possibly better than in October. I told the Rheumy that I might change my mind if and when I begin experiencing more widespread and miserable symptoms like so many of you have.

I believe that stress is what drives the PSA beast and that the way to tame it lies in finding and instituting dietary and lifestyle-changes which mimic the effects of NSAIDs. I think each of us has different triggers that we might be able to avoid, if only we have the patience to figure it out ( and a cooperative primary care person). It seems that my Rhuemy has little interest in finding the triggers, only wants to treat the symptoms.

I know those of you whose symptoms are far worse than mine require the nasty drugs, my theory is that if we can make these changes early enough, when symptoms first appear, there may be a way to avoid that path.

Sorry to be so long, and thanks for listening!

2

If the only thing we had to worry about with this disease was pain, it would be easy.

Sadly the damage that occurs to joints with or without pain can't reversed nor when the organs go can that be reversed either. So knowing what the physiological process is (whatever the cause) and knowing that process can be interrupted by either disease modification or inhibiting tnf production. By allowing a lot of disfigurement, organ failure, crippling, and and other problems rising from system wide inflammation to be avoided, we can live a more normal life a lot longer. If the arthritis pain is managed along the way, thats a plus.

I realize that you have had an easier life than many of us and are now experiencing some of the normal turmoil that effects us all at some point, but please don't confuse that with the disease.

Of course stress feeds PsA, the physiological mechanism of stress stimulates the already over active immune system. But eliminating antagonists, eliminate only the "flares" that come with this disease, it does not eliminate the disease.

3

Turbodaddy- You said, "I know those of you whose symptoms are far worse than mine require the nasty drugs, my theory is that if we can make these changes early enough, when symptoms first appear, there may be a way to avoid that path." Interestingly enough, the standard treatment now is to treat aggressively right from the start. You even pointed out yourself that you seem to have permanent damage to your hand. This isn't to say that all permanent damage can be avoided through medication, but it can be slowed and/or minimized through appropriate and aggressive use of meds.

I have been lucky enough that my disease progress has been relatively slow, but that doesn't mean that I haven't experienced any damage. It is just minor still. I was diagnosed within a few months of developing concrete symptoms, and was on a DMARD within the year. If I had pushed through the pain and fatigue without the medications it would be a MUCH lower quality of life.

4

well that is an interesting view point turbodaddy .

Everyone calls the bios and dmards nasty drugs. I feel the disease is far more nasty than any med I have to take .

For me dmards and bios are the only way to treat this disease. I guess it depends where you are in disease progression and the severity of your disease.

I am happy for you that you can manage your disease the way you do. good luck

5

I am so glad that you can manage this your way. But with me, the "nasty" drugs are the only way I can function. My goal is to reduce the pain and inflamation so I slow the progressiveness of the joint damage. I am a mother of three children who are all very active and they need their mother. They have seen me cringe with pain, miss their events because of this nasty disease and move at a slower pace at an age of 46.

They are grateful for the meds for as far as they are concerned I am "cured" because I can drive them around, cook them dinner, and go to their events.

Good luck and keep us posted.

6

Thanks to all of you, as a newly diagnosed PSA patient I acknowledge that you certainly have more experience with this than I. As I said, if things go downhill, I most likely will follow the same path as some of you. It is comforting to know this forum is here when I need it. Maybe I was whining, sorry!

7

Turbodaddy, I'm sorry about the many losses you have had in the past few years. It sounds very very tough. I really feel for you. What I say below is NOT a rant "at" you. Just my personal philosophy of this disease. Best wishes and I'm sorry you have this disease.

I've had this disease for 30 yrs now (since I was 10). I have done every diet modification / stress reduction / alternative med thing out there. I can tell you, if this disease flares and starts damaging your joints / organs / eyes / whatever, no amount of gluten free and exercise is going to fix it.

I've been very lucky, because in 30 yrs my damage has progressed fairly slowly. I have lost one eye (had it removed, I have a prosthesis now) due to inflammation, had 1 tiny joint fused on each of my pinky fingers, and have minimal loss of range of motion in my elbows (they can straighten most of the way, but not all the way).

Think this sounds terrible? I have not been hit with the worst of it. I consider myself LUCKY that most of what I deal with is severe pain and inflammation and not too much damage.

Yes, I've had COMPLETE remissions, brought on only ONCE due to medication (Enbrel, 10 yrs ago), but 3-4 other times for *no reason at all*.

Some of our responses to this disease can be managed, but my husband and 2 children are THANKING "Big Pharma" daily for the meds that have helped me live a fairly normal life (by that I mean going to college, getting married, having children, being a stay at home mom). I am thankful for the drug researchers spending millions, working for years with failure after failure, finally getting it to market, and often giving out samples, copay cards, and financial help to those who need it. YES they are marketing and making a huge profit, but that money they put in in the beginning is a front end investment. A huge risk. I for one am very grateful they do it.

8

In June 2003, my beloved grandmother died. My mother died not quite four months later. She was the second of my parents to die. Took awhile to wrap my head around being "orphaned adult"; took even longer for my brother to do so, so I dealt with that stress also. I worked on a very stressful capital brief from February to August of 2004, including several months where my lead counsel was in and out of the office because of his mother's illness and death. On August 7, 2004, my husband received word that he was "cross-leveled" to a unit in Indiana, next stop Iraq. He left on Spetember 30, 2004 and returned November 10, 2005 (that fourteen months was stress on steroids)

I don't say this as some sort of comparison to your situation, but simply to say I believe stress is what activated my dormant genetic tendency toward auto-immune disease/inflammatory disorders.

I was in the doctor's office exactly a week after my husband returned and was sick until May 2006, when I finally went on a course of Prednisone. It helped my activated immune system "unactivate," but I went undiagnosed in part because of my stubbornness.

I have the same stressful job. Looking back, the times when I was under the greatest stress is when I hurt and would hit Prednisone for a week or so, not find a rheumy and DO something else.

I lost the ability to raise my left arm or put it behind my back sometime in *2011* (looking back on some writings, I first had left arm pain in 2009). I got progressively worse in other ways: unremitting exhaustion being a big one.

I pushed through the pain and exhaustion for I don't know how long. Sitting in the chair for my hairdresser hurt; I was usually down the next day. Toward the end, my life was limited to my house, my office and very little else.

I started MTX in September. I feel better. My husband and I attended a Vince Gill concert in November--the first one we had been to in almost two years. I was fine the next day; not huddled under my heated throw praying I would stop hurting. I walk better; not great, but better. The people I supervise have noticed that I sit better and straighter. They all remarked at a major meeting last October how much better I looked. I FEEL better.

I'm looking at arthroscopic surgery on my shoulder (and maybe my knee) sometime this year; part of which is likely damage from being untreated for so long.

MTX (and the Humira I start next week) are certainly not a cure, but I know I'm slowly reclaiming my life.

9

Kudos that you can get by without the "nasty" drugs and I really hope your good fortune continues, but for me the drugs aren't nasty...it's the PsA that's nasty...

When the PsA decided to rear it's ugly head in me it had a field day on my chassis... everything was swollen and I hadda get fluid drained, etc. but since I've been on the MTX and Humira I'm so much better off. I'm still not great but I know where I'd be without 'em... a puddle!

Best wishes for good days....