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First off, thanks for so many sweet thoughts and encouragements.

Now down to business:
He's nice and seems competent and listened to me. Then he told me that my pattern of facial pain is uncommon among Sjogren's patients (not true....) and that it might be fibro and as such would respond to exercise. I told him I exercised for three years regularly in an adaptive class until it grew worse and worse and I was spending the rest of the day in bed. He said I would have to find "balance". He said the fatigue would respond to exercise. He suggested bicycling and I said "the sun?" and he said "oh of course" and suggested I get a treadmill. He wants to bring me off Imuran and maybe off Plaquenil and ultimately off ms contin. He believes the pain will be better handled with Lyrica and nortriptylene. He said the exhaustion and general pain was likely fibro rather than Sjogren's and would respond to exercise and physical therapy. None of my fibro spots was reactive when he checked. As for the fevers, he really just shook his head and didn't respond every time I asked about that. Same with my hair falling out.

Then of course came the line I have heard from every doctor I've seen since this began: The question can't be how to relieve the pain, because it can't be relieved. Higher levels of narcotics make for higher levels of pain (something I already know). The question is how to live with constant pain and have quality of life.

And the answer was a list of things I can't afford: regular work with a therapist to talk about frustrations and the like, physical therapy, a sleep study (insurance won't cover it), a treadmill or gym membership (I was working out at a gym when I got sick and finally hit a wall and realized that my muscles just didn't recover like everybody else's) and find a program somewhere of cognitive therapy.

And balance.

They took a lot of blood and urine and the like. He really was kind and listened, but had no answers. He said absence of organ involvement means staying away from the stronger immune suppresants and that I probably shouldn't be on Imuran.

I know he's telling the truth -- nothing to be done about the pain. I think he's wrong about exercise helping fatigue because I was doing that and it really didn't work. The fatigue got so bad I can't go and I really, really loved that class.

How to live with constant pain and still have hope, joy, happy anticipation of the future, the will to get out of bed on the worst days..... I don't have an answer. I'm looking for it. I have recreated myself as an artist. It's satisfying and I seem to have a feel for it. I am trying to reconnect to the spiritual inner life that has in the past given me so much comfort and hope. I'm trying to develop a regular meditation practice, but on many days the noise in my head is very, very loud and persistent.

Sorry to have gone on so long. I am exhausted emotionally. This disease seems to overwhelm every other aspect of my life. I hate it. And I hate that doctors look at me and see a basically healthy person, fat and out of shape from inactivity, complaining of intractable pain. No, I don't want to be sicker. The kidney infections and bronchial infections are enough. And thank God I haven't had one since going off prednisone. And no more of those awful seeping little infections on my fingers that I kept for so long.

Can any of you help me make sense of this slug of information and emotion? I'm out of gas.

Sunny
 

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The Other Illinois Tammy
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Sunny,
I want to say first off, I do not agree with exercise will help the fatigue also. I can understand why you picked confused as now I have this funny look on my face I can't seem to shake. I also don't believe it is a life of coping with the pain it needs to be managed as any other doctor might tell you (I say might because it seems that these days no one can relate to us). I am so sorry I was hopeful for you this time. I am not sure why the doctor at least did not try to answer you other questions about your hair falling out (did he not think that fast, sorry). It breaks my heart that so many of us are posting more and more about the bad treatment we are getting. It is alarming and very concerning to me. I hope you start feeling better soon.
 

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Hi Sunny,

I also do not think exercise helps fatigue either. It may for some folks but never has for me and obviously not for you either. As for doctors suggesting we do things that cost a lot of money, well I understand that some things in life are easier said then done. It was suggested to me to do yoga and I laughed and said, "I dont have 2000 dollars a year to spend on yoga"!

Life can be frustrating and your right, it is all about how to have quality of life living with chronic, unrelenting pain, day in and day out. I wish you luck on the new meds and hope it helps you more moving forward.:wink2:
 

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Dear Sunny,
This Doctor may have been kind, but he doesn't appear to have helped you. I assume it wasn't him who prescribed your Medication and I am concerned that he wants to change things.

I had very severe pain which was brought under control by a Pain Clinic. Far from needing higher narcotics I found that I have been able to drop the dose significantly if I take them regularly. (I have gone from 240 mgms a day to 90 mgms. ) I do not believe it is acceptable to have constant pain. I hope you can get the help you deserve.
x Lola
 

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Hello Sunny,

I too would be very concerned in him wanting to change your meds. And, why on earth would he want you off plaquenil???

His proposed changes (at least on paper) look pretty drastic and drastic is something we can all well do without.

I know that when my muscles are not ready for exercise, exercise in any shape or form does them (and me) a lot more harm than good. My physio (and she's supposed to be an expert) agrees. She works with me "as I would a fibro patient" even though I don't actually have fibro. Basically that means that on bad days she is even more gentle than on the good days. Gentle regular exercise is supposed to help fibro, I know that but at the end of the day, we have a lot more experience of how our bodies react than the guy sat opposite us. My Mum has dermatomyositis (I have a lupus/polymyositis overlap), lupus and fibro. Now, it may be the dermatomyositis throwing a spanner in the works but she has NEVER been able to exercise (other than gentle walking when she feels up to it) to improve fibro.

Anyway, all that to say that his attitude seems a little gung ho to me but you were the one who was there and maybe that's just my interpretation of your description.

Just my thoughts,
Katharine
 

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OH Sunny, kind he may have been but helpful..NO! I am not sure what your position is, was this Rheumy recommended to you? I think you need to go and see somebody else if at all possible. To be feeling like you are and to be given no positive plan of action, even if it is to try and move forward is horrendous and soul destroying. I too am amazed he is taking you off plaquenil. Why? You need some pain management to make your quality of life manageable at least some of the time, to just say, ah well sorry, no can do, is not acceptable, you deserve better.
Please don't just take his word for it, push forward for a better medical opinion and plan... we all need to feel we have somebody knowledgeable in our corner... I just think you need some better days somewhere ahead :worried:
Take care of yourself and let us know how you get on.
Claire X
 

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exercise cures all...HA!

mornin sunny

i'm so so sorry that you hit this brick wall. i don't know anything about your particular situation but to change your diagnosis is scarey. how did you find this goober?? i agree that i would find another doc, until i found someone who knows about auto immune disorders.
i'm kinda going thru something similar, i talked about the other day. my rheumy has been out of country for quite some time and he has someone filling in for him. i am afraid she will try to change my diagnosis and treatment plan. she also doesn't like to write pain scripts so we have a "pain guru" that i have to see now too. the pain stuff isn't as concerning as the my treatment plan for sle. i'm keeping my fingers crossesd.

i will pray for you and that you find someone who mite actually know about your disease.
 

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Discussion Starter #8
To make a very long story short -- I found this "goober" which is a good description I think, because he's the only rheumy in town. I live about 3.5 hours from Seattle where I could probably find a few decent doctors. If my insurance would cover them, which it won't because they're "out of coverage area." I've tried appealing to the insurance company, but their position is that we have a rheumy here in town and another is not necessary. I wish there was a pain management clinic, but no such luck. My MD handles my meds and will continue to, but he will rely heavily on the recommendations of this guy. And the new guy is much better than the old guy he replaced who kept telling me I wasn't sick because Sjogren's doesn't make people sick and I couldn't have lupus because I don't have kidney disease.

Okies, I'm just not going to think about this for a while. I've got to explore my options but it's going to wait for a day when I'm not emotionally fatigued. I'm fighting a system that's hard to fight. And a husband who wants to hear that I'm not really too sick and that exercise will fix me because he's so scared of how sick I am. I can't drive myself to Seattle and believe me, I can't handle public transit. I get confused and exhausted and would end up sitting somewhere on a sidewalk bawling my eyes out. Besides, did I mention that money is short and my husband may not have a job much longer?

That's enough from me. I know I sound shrill and desperate. I don't really go around like this all the time but I suspect it's always there inside waiting for a kind word to bring it out.

Hugs,
Sunny
 

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Dear Sunny, I am so sorry you have so many worries at the moment.
I hope that your Husband's job stays safe.
x Lola
 

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(((Dear Sunny)))

Being kind doesn't really help if he has no idea what he is talking about :sad:
I hope things get better soon for you and your husband.

Hugs
Elle x
 

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Has to be a frustrating and scary appointment for you. Do you believe the Imuran has helped you at all? If it hasn't, then I would have to agree with him that going off it might be for the best. I cannot for the life of me understand why he would want to take you off Plaquenil since it is such a beneficial medicine for those with lupus or Sjorgen's.

Maybe once he gets to know you better & sees the test results he ordered... he'll start working with you a little more, and will take your feedback on what helps/doesn't help. If you're stuck with this guy, then we have to come up with ways to make it work as best as possible.
 

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oh (((((((((Sunny)))))))) I really hope that it will work out. You never know, now that you have met him and know what he's like you might be able to better speak to him next time and to say to him (quite straightforwardly) that you are rather worried about him wanting to change so many meds, especially the plaquenil and explain the trouble you've had in the past etc.

I really hope that hubby's job will stay safe and that things will look up for both of you.

Sending loads of hugs :grouphug2:

Katharine
 

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Sunny do not listen to this man!! I had little windows of my autoimmune desease and fell ill, they told me it was emotional because my boyfriend died. I was a size 0 at 5.6 and had unexplained bruising all over me, severe stomach pains and incredible exhaustion. So I listened and took the anti depressants. I carried on and worked my 3 jobs (as a divorcee with no choice but). I was exhausted and eventually relaised the pills were giving me a false energy, so I stopped them. I then found that they were actually overdosing me, poisoning me slowly as the amount was 3x what it should be for my BMI. I finally had a full and complete "physical" breakdown through over activity..., nothing more, nothing less. it left me bedridden for 18months and unable to make memories. Do not listen to this man!!

I think he is correct that muscle wastage and fatigue responds to excercise but not when there is any kind of disease process going on even if the bloods don't show it . Listen to your body and urge your doctor to prescribe what you think you need. In your your position with my hindsight I would ask for a second opinion...

Things don't always show in the bloodwork. Listen to your inner voice. was hoping you would have gotten somewhere with it....

ooh i should say also I gained 37lbs after my physical breakdown and I didn't even gain baby weight, have been skinny all of my life. Sometimes when the body is ill it holds on to the fat for a good reason.....:rolleyes:

P xx
 

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Sunny,
I am so very sorry that your health is at jeopardy of this fool. I am also sorry for the insurance not going with a doctor who is out of area.
The first rheumy I saw told me that lupus could not disable me. He also got the distinction of being the first doctor I fired. The abuse we suffer at the hands of people who supposedly took an oath to do no harm. Right......misdiagnosis, mismanagement of our health, and giving wrong advice I guess does no harm....sure! And I have 40 acres of waterfront property in the middle of Puget Sound to sell too!

I hope your husband's job stays secure. In this economy, jobs seem to be falling right and left. If you do end up with lack of health care, you can apply to the state "Good Health Plan of Washington". Write or call your state Senator or Representative if you need help with it. If you still run into problems, let me know. My representative has been great about helping out for people who are out of his area. He also then goes to the "real" rep for the people and lets them know they have fallen down on the job. He gets a kick out of pointing out to them that they work for the people who elect them and if they want to continue working for them, they need to take care of them. :)

I wish there were easy words to solve the problems you have faced. Let me know if I can be of help for you.
Sally
 
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