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May I Please Vent?

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#1 Patty


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Posted 11 May 2007 - 06:59 AM

OK I go to my general practitioner's office only to find out that my Dr is only in the clinic 2 days a week and today was not his day to be there so I saw an APRN. OH great, she really has no clue what scleroderma or dermatomyositis are. Just my luck!!

As you all know I have been in pain for a while now and when I asked her for some pain pills she said that the clinic is not set up to give out pain meds. I started to cry because its not fair that because I quit my job to raise my grand daughter and now I have low budget state insurance I have to live in pain. She suggested I call my rheumatologist and ask her for pain meds if I needed them. I told her when I have asked in the past she has said that I need to get them from my general practitioner. I do have an appointment Thursday to see her but I know shes not going to give me meds because she said I do not need them anyway! I must be a big fat liar!! Witch brings me to my next vent.... I am a big woman now. I was a tiny girl when I first got my diagnosis and now due to the meds I have gone up about 12 sizes!! I want off the prednisone but when I asked my rheumatologist about tapering me b4 she told me if I wanted off them I needed to find a new Dr!! Its my life and my health I should have a say in what I take and don't take! I have given this a lot of thought and I am going to taper off and find a new Dr but in the mean time she HAS to taper me so I do not get sick. I will insist on this Thursday when I go.

So to sum up my vent, I have to live in pain because I am poor and go to a clinic not a reg. Dr's office I have to take steroids or I won't have a scleroderma/dermatomyositis Dr!!!!! GRRRRRRRRRRRRRR

Well its the weekend so maybe I will call an impromptu girls night at my house and forget about all this untill Monday when I can maybe do something about all this!

Thanks for reading yet another of my rants and thanks for all the support you all have given me throughout this.

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#2 Sweet


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Posted 11 May 2007 - 07:53 AM

Oh Patty,

I am so sorry. I feel your pain and frustration. I can relate to the negative feelings of weight gain. I have gone up 3 sizes and don't like it one bit. It can really play a number with your mind as well. The other thing I want to tell you is that patients do have rights. You are right it is your body and you can accept or refuse any treatment. Stand your ground if you feel inclined.

I hope you do call the girls over for the night and have a grand ole time.

Much love
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#3 Clementine


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Posted 11 May 2007 - 08:16 AM

Sorry dear. I'm in a funk too...too bad we can't have our own little impromptu gathering right now...just me and you.

I hope you can get a remedy soon. No one should have to live in pain in this day and age.

Good luck and have a good night!

#4 bookworm


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Posted 11 May 2007 - 09:25 AM


You are so right: you do have a right to have pain relief. I feel so frustrated for you! By all means, find a new doctor as soon as possible!!!

Meanwhile, until you find one, I would recommend that you not say too much to your rheumatologist that would cause her to "fire" you as a patient. She has already told you that if you try to taper off Prednisone on your own you can find another doctor. I have no doubt that she will stick to that and you are going to be angrier than ever. I don't mean that I would put up with this state of affairs, but I'd just play it smart! Let her think that you are going to obey her every command because, apparently, her ego demands this! Since I don't know all about your insurance or financial situation, I don't really know what will work for you. Just believe that SOMETHING WILL.

What about going to the emergency room one night after clinic hours and presenting yourself in terrible pain? Maybe you could get a prescription for something that way. I take Celebrex and Tylenol and have been given stronger things in the past for a bad finger ulcer, but I don't need that any more.

My rheumatologist has wanted me on Prednisone for some time now, but she wanted the dose to be between 3 and 5 mg. Right now, after a flare of joint pain, I am on 7 1/2 mg. and every time I drop even 1 mg. off, I am in awful pain. So now, my rheumatologist wants to try Methotrexate. I am not happy about this, but I also am not happy about the Prednisone situation. I also am not happy to be hurting all the time. My rheumatologist has said that the whole thing is a balancing act with the meds. Methotrexate has some bad side effects and can be a dangerous drug, too. I guess it controls swelling as does Prednisone, but it doesn't have the same side effects. It has it's own and they also are not good. I may wish I was back on Prednisone after I get off it!

How much Prednisone are you on? I get the feeling that you are on a high dose and that it has caused you to gain weight and that, even on the high dose, you are in a lot of pain? Is this correct?

For your doctor to act as if you don't need anything for pain is ridiculous. I don't understand this and I think it must mean that she doesn't know much about scleroderma or how to treat it, which is certainly not doing you any good. You really must find a doctor to help you with this disease. Are there other rheumatologists in your area? Or could your primary care doctor recommend one? I know some people have to travel across the country to their doctors in order to get proper treatment. I know this would be expensive and a lot of trouble, but maybe your primary care doctor could work with a scleroderma specialist and treat you that way. In other words, maybe you could go just once a year or every six months to the nearest sclero specialist and this person could direct your primary care doctor (or a rheumatologist other than the one you now have) in the proper treatment of your disease. That way, if you needed to see a doctor close by, you would have one, but he or she would be guided by the specialist in the correct treatment and appropriate pain relief.

The thing about telling off this incompetant (in my opinion) rheumatologist you now have, is that she probably will do exactly as she has warned and dismiss you as a patient. Then, you are no better off than you are now! You will still be very angry and you will still be on Prednisone. So I recommend that you do some play-acting and see what you can coax out of this doctor in the way of help, and meanwhile, be seriously searching for another doctor! I would think that your PC doctor could prescribe something like Celebrex if you are having arthritis-like symptoms. I wouldn't think that would be considered a "pain medicine" per se. It's an arthritis medicine and, yes, it is for pain, but I am guessing that nurse at the clinic meant they couldn't prescribe pain medication, but I don't know. You will probably have to see a doctor and not a nurse for the prescription, so make sure you find out when you can see a doctor at the clinic. Actually, I don't know exactly what sort of pain you are having. I guess I am assuming joint pain because of the Prednisone.

Have you had tests done to see if your lungs and other organs are okay? Do you have acid reflux problems and, if so, are they being treated? Do you have finger ulcers? If so, surely this rheumatologist knows they are painful.

Well, sorry this is so long. I hope you will not give up! There are some lousy doctors out there, but really, there are some good ones too. Keep looking!

Mary in Texas

#5 WestCoast1


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Posted 11 May 2007 - 12:54 PM

Yuck, it sounds like a terrible experience, I am sorry to hear that. It seems that we have all had a turn on the Medical Marry-go-round. I REALLY hope that you find a Dr. that has your best intrest at heart....someone who wants you to keep you healthy and pain free!


#6 jefa


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Posted 11 May 2007 - 08:03 PM

Patty, I hope your venting helped to clear things a bit and that you aren't suffering too much from your impromptu girls' night. Seriously, Mary has thoughtfully given you some excellent advice. I wish you luck trying to find the right medical team.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
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#7 LisaBulman


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Posted 12 May 2007 - 01:24 AM

I am so sorry you had such a horrible appointment and are frustrated. You have every right to be. You really need to find a dr who you can work with not just follow what they say or else!

Please try to relax, if that is possible. Let us know what happens with the prednisone....

Lisa Bulman
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#8 kelowna52


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Posted 12 May 2007 - 04:16 AM

Patty, I'm so sorry you have to go through all of this. I too, am in pain, 24/7. I have went from a size 8 to a size 12, form the meds I'm on, it is very frustrating. I'm thinking of calling my rheumatologist, to get in early to see if I can get something else for this body pain. That sounds like a great idea, invite your friends over and have PJ party. I sure hope you can find a new rheumatologist in your area, and you are able to get prescribed, the meds you need. Mary had some great suggestions. Take care.

Jackie S.

#9 relicmom1


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Posted 12 May 2007 - 04:34 AM

Hi Patty!
Why is it that the doctors are suppose to know about the symptoms of this disease, yet they don't seem to understand that we are in pain, sometimes severe! I truly feel your frustration. The rheumatologist I used to see was the one I was seeing when I first applied for Social Security Disability and on the quesitonair he was sent, he stated that I had no limitations on movement, no pain, could stand or sit for at least 6-8 hrs a day!!! Whnen I found this out, I went through the roof! I was livid to say the least. Even my lawyer didn't understand why he answered those questions like that. She had copies of my complete medical records and she point out every visit I complained of pain and on HIS exam, he noted limited range of motion!!!!! Needless to say, I don't see him anymore!! I am fortunate to have decent health insurance, even though it's an HMO. My primary care md has no problem giving the necessary referrals to go see whoever I need to see. He admits that scleroderma is over his head as a primary care physician and he wants me to see someone who can help me. And , just because we complain of pain, severe pain and we look "normal", we must be narcotic seekers. But, everyone is right, you need to play nice and "jump thru the hoops" all the while trying to get yourself a new dr. You will be in my thoughts!! Good luck!!
Peace :)
Barbara aka relicmom1