Posted 07 April 2009 - 05:18 AM
Just need to vent. Yesterday my rheumatologist told me that it is impossible for an individual to "hurt everywhere" and I just wanted some support on this one!
I am having a flare that is in its 7th week, causing me to ache and sleep all the time. He told me that I am just not getting enough quality sleep and put me on more sleeping meds. I cried "I know this pain is real and not in my head!" He said scleroderma will not cause body aches.
To add insult to injury, he said he can't write a letter to my short term disability company to appeal their denial because none of my labs show anything wrong with me, that I am just tired and that isn't a disability.
Any support out there?
Posted 07 April 2009 - 05:46 AM
I'll support ya!! I have pain everywhere at times too! Fire that rheumatologist, sounds like he's not supportive. When I over do it I ache everywhere. I feel like I have the flu. I do have Lupus and Fibromyalgia as well. I wonder if you could have Fibro?
Maybe you should see your primary care provider and get a recommendation.
Hang in there!
Posted 07 April 2009 - 06:53 AM
Posted 07 April 2009 - 08:53 AM
Fire that doctor asap. Also give him the link to this forum so he can read up on what the informed doctors and professionals say and what people who live with it have to say. Of course that is wishful thinking that your doctor would take the time to read something up to date about this disease. Just fire him and find another one! You are the best witness to your own body.
Posted 07 April 2009 - 11:43 AM
Posted 07 April 2009 - 11:46 AM
You are at the right place for empathy and sympathy, Girlfriend! You have heard from those with first hand knowledge. Plus, you may add me to that list, as well!
We of the Scleroderma Community take exception to "that person's opinion".
1) Any doctor with any knowledge at all about Scleroderma/other chronic illnesses would not presume to assume "how a patient feels"!
2) It cannot be assumed from labs that "nothing's wrong with you"!
3) "Sweet Pam" and I both have Fibromyalgia, which can cause pain "all over" yet, would not show up on labs.
The doctor is taking the low road, in my humble opinion. Therefore, take the high road and find yourself a rheumatologist who is compassionate about his/her patient and will get to the bottom of your pain!
As for your short term disability, Sherry, a knowledgeable rheumatologist should be able to salvage all of this.
Once he/she has had a chance to examine you properly and find out the cause of your pain, an answer should be in the offing.
Now, upward and onward! Let's dial that phone!
Keep us posted, please.
Posted 07 April 2009 - 12:10 PM
You're another one recently who could have said to the doctor "thanks for the entertainment now can I see the real doctor?"
Of course fire him but maybe print off information from this forum and give it to him so if he ever has another sclero patient they won't (hopefully) be told the same garbage.
I know it's hard to challenge doctors during the appointment but if you're going to fire him anyway maybe go back and see him, tell him what a mis-informed, inadequate doctor he is, give him the info, fling open the door so everyone can hear and tell him he's fired and walk out leaving the door open so he has to get up to close it whilst everyone gets a peek at him. Satisfaction guaranteed.
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Posted 07 April 2009 - 12:22 PM
Here's a link to the Scleroderma Clinical Trials Consortium doctors in Illinois and one for the ones in Wisconsin.
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Posted 07 April 2009 - 02:30 PM
First off, I want to let you know that you are not crazy.
There are some wonderful doctors out there who both listen and understand, but the ones that seem to be in specialties simply for the extra money can give them all a bad name.
I got a huge grin reading Amanda's suggestion and with I had the courage to do that myself sometimes, it would definitely soothe the anger many of us have felt when brushed off by the one we expect to be our biggest caregiver.
I am with the rest of the posters in saying that you need to fire that doctor ASAP. My suggestion would be to write a polite letter, giving examples from the ISN Medical pages to help the doctor learn more about a disease process that he seems to be behind the times on. Tell him that you do not blame him for not knowing, since Scleroderma is not something that every rheumatologist comes across and you just want to help him gather some information. It is the old Southern "sugar" tactic, where you are sweet and kind as you point out what a fool the person is. Do not even bother to see that doctor again, it would be a waste of your co-pay and time.
Jeannie has posted a great link to some wonderful doctors in your area, and even if they are too far away or not under your insurance, if you call their office they might be able to give you the names of other doctors in your area that know about Sclero and related issues.
You are not crazy and shame on that doctor for making you doubt for even a second your own feelings.
I hope that you are able to find a good and caring doctor soon and that your disability issues will be a thing of the past swiftly.
Posted 07 April 2009 - 04:50 PM
And I can tell you I hurt all over, mostly joints and back, but also stabbing pains in bottoms of feet and throbbing pain in muscles in forearms and legs.
Posted 08 April 2009 - 01:35 AM
I really love Amandaâ€™s approach to dealing with the doctor. While firing your doctor, also, remember that plain old looks can say it all. As a friend said to me, just give him the look that says, â€œIf we were in the Mojave Desert right now buddy, you wouldn't be getting a drink out of my canteen!â€
Hang in there. Even if this doctor doesnâ€™t understand, you will be able to find one that does!
Many hugs and best wishes,
Posted 08 April 2009 - 04:25 AM
That is right up there with the doctor who insisted that it can't hurt and be numb at the same time.
You can't always believe the doctors! How would he know if it is sclero or something else. No bird footprints on the beach does not prove there are no birds.
I have several autoimmune problems and just because one of them can't do a specific thing what about those things that have not been tested?
I know a person can "hurt all over" even when the cause can't be found. Being so let down by your doctor within itself can add to pain.
One of my doctors did some autoimmune testing and as a result he told me to see a rheumatologist. I called to make the appointment. and it was like "do you want it today or tomorrow". When I gave that rheumatologist the labs she looked and them and said she doesn't know anything about those tests. Back to the doctor who had referred me. He just said to get a different doctor. When I called for that appointment the earliest I could get was about 2 months. When I saw that doctor she not only knew about the tests and did even more.
I hope this turns around for the better. I believe you.
Posted 08 April 2009 - 06:24 AM
I hurt so bad and it is getting worse that I can't hardly wait until my apt in May. I am tempted to call his assistant but I doubt they'll do anything until I see him. Whether this pain is from the Sclero or the Polymyositis that I have I don't really care. All I know is that I hurt and I would welcome anything that would give me some relief. I am tired of having to pop the pain pills in addition to the pain patch that I wear.
So I'm with the majority here who say either get a new doctor or set this one straight.
Good for you for not settling to be mis-understood and not taken seriously.
Posted 08 April 2009 - 10:04 AM
i too suffer a lot of aches and pains and I sleep more than I should coz im always lethargic ,so ill back ya 100%
Posted 08 April 2009 - 04:14 PM
Ditto, ditto, ditto! You need a real doctor that knows and understands these diseases, and yes, you certainly can hurt all over!! Susie is right, Fibro can also be another consideration. I have Fibromyalgia and it can make you hurt in places you wouldn't even dream of!! You need a good rheumatologist that knows something, one that knows anything by the sound of it would be better than the one you have: I agree with the others, time to start searching now for a new doctor, don't wait, your mind is perfectly good!!
Posted 08 April 2009 - 08:00 PM
I hurt all over frequently! I wonder if I have fibromyalgia, but whatever it is, it hurts -- all over. My doctor believes me and treats me with respect.
Good luck finding a new doctor. I know you will do it!
Mary in Texas
Posted 09 April 2009 - 01:56 PM
I am going to pipe in here and say I agree with everyone! Get a new Doctor who will help you sort through this difficult time. Don't forget to take care of your mental health as well and reach out to a professional if you are feeling extremely overwhelmed. There are tons of caring, licensed and qualified individuals to help you with this.
All the best to you and I hope you find some peace and relief.