Rheumatologist Visit / No Dx / No Help

[JazzGirl]

Hello All:

I have not posted in a few days because I have been so totally depressed. I had my follow up app. with the rheumy on Monday. She told me that at this time she cannot dx me with anything, so there is nothing that she can do for me! No medication, no advice, nothing! I sat in her office crying. I am so tired of being sick and in pain with no answers. I mean I even had a stroke and I am only twenty-nine and they can't even tell me why my stroke happened.

I then told her that I am used to the fatigue and body pain at this point (nice right?) but my skin burning is just to much. I asked her if the burning could be caused by my medication. She said no that she and my nuerologist believe that my nerves are firing off incorrectly due to the stroke. I said that this only started since I was on these new nuerological medications. Was she sure that it was not any of my meds? Once again she said that there was no way that it was my medications and that they actually wanted to up some of my nuero doses (which I already believe to be to high!).

She told me that she was sorry and that she and my nuerologist do believe that I am sick (that's reassuring!) but that there is nothing that they can do to help my fatigue or pain. She also said that there are alot of people in my situation who are sick and fatigued and that they don't know why! That is terrible it is not a comfort to me to know that there are alot of sick humans without any hope of a dx and help! She then said that my illness is obviously cyclical and she hopes that I am close to the end of this cycle!

At this point I was still crying she told me sorry, asked me if she could come and see me perform when I am better (I am a singer), handed me a tissue and said good-bye. That was it! No help, no advice, no nothing!

I then went home and decided to look up my medications on my own. Ever since I had been put on Amitrptyline I have been feeling worse then I already felt. I googled Ami and there it was avoid sun, wear an SPF of 30 or higher and a hat when out in the sun! I am on a high dose of Ami 250 mg and they wanted to raise it even higher to stop my skin from burning!

I am livid! I have been asking to get off of Amitriptyline for about a month now! It made my brain foggier than normal and I was even more fatigued. My nuerologist kept on telling me to just keep going with it. And then it turns out that it was also the cause of my burning skin!

I am so sad and frustrated that I don't know what to do. I am so discouraged that I don't even want to look for another doctor. What should I do? Is someone, somewhere going to be able to dx me and help me? Please give me advice. I am at the end of my rope!

Thank you for listening!

-Liza style_emoticons/<#EMO_DIR#>/sad.gif

[wifajax]

Hi Liza!

I am so very sorry that your visit to the rheumy was so frustrating and unhelpful. I can understand completely how angry you must have felt to be told there are a lot of other people like you and to (basically) suck it up. If she thinks you are sick, why on earth isn't she doing her detective work to figure out what is going on???? style_emoticons/<#EMO_DIR#>/hissy1.gif style_emoticons/<#EMO_DIR#>/hissy1.gif style_emoticons/<#EMO_DIR#>/hissy1.gif

In any case, you told her you are in pain, and she is unwilling to treat your pain. Does that sound like a caring doctor who is treating you as a person? It sounds to me like you are a set of lab results, not a human being. style_emoticons/<#EMO_DIR#>/mad.gif

Is there any way you can see another rheumy? I know that going through it all again is not what you want to think about, but do you want to be in pain all the time, either?

Please try again. Somewhere out there is a doctor who will listen to you, take your symptoms seriously and treat you as you deserve to be treated.

Terri

[lin]

sorry you had a bd visit, your on a high dose of Amitriptyline hey?.... can't understand why they have not even thought of sending you to a pain clinic, or something, so she is saying then you have not got a rhuematic (sp)condition ? have they done all the test?........ i feel so sorry for you just being left like this....this doesnt help you does it , grrrrrrrrrrrrrrrrrrrrrrr!! So whats going to happen now?

you take care hun Lin xxxxxxxxxxxxxx style_emoticons/<#EMO_DIR#>/foryou.gif

[teabellyjules]

style_emoticons/<#EMO_DIR#>/hugbetter.gif

Sorry to hear that your appointment didn't go well Liza. I agree with Lin about seeing another doctor and or a pain clinic. You should not have to 'put up' with the pain.

Sending you lots of pain free vibes
Jules
XXX

[jude mack]

Hi Lisa style_emoticons/<#EMO_DIR#>/hugbetter.gif

I can't believe your rheumy just said good-bye, after telling you she believes your in pain. Why did she think you were there for in the first place. If she thinks your pain comes in cycles????, then she should have given you meds. for those pain cycles.

I'm sorry you had to go through such a lousey appointment. I would also print what you read about Ami. and shove it in your neuro's face. I have to agree with the others, a new rheumy and or pain doctor. Take care of yourself and keep posting.

Stay Well style_emoticons/<#EMO_DIR#>/flowers.gif

[Maia]

Have you talked about neurontin for the nerve pain? I've heard about that being used
with better success/results than amitryptaline.

Definitely seek out other doctors for second opinions or a pain clinic. Have they tested
you for all the clotting antibodies and all lupus type antibodies?

I feel for you. I hope things improve for you sometime soon style_emoticons/<#EMO_DIR#>/wink.gif

[Joandublin]

Liza.... style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif

What a terriible appointment and a terrible experience style_emoticons/<#EMO_DIR#>/crying.gif

I really think at this stage you need to consider finding another rheumy. Any rheumy that can be as dismissive as her deserves to be kicked into the kerb.....

Cant believe she said that about the Amitriptyline. That in itself should tell you that this rheumy is not one for keeping......

Please dont give up Liza. I know how desperate you must feel but try and muster up the strength to find out exactly what is wrong with you and how best to treat it. Have you looked or posted in Find a Doctor Forum? That might help with your search to find someone who will listen to you and who has a better bedside manner than your current rheumy....

Of yes..and I agree with Jude as well. Print out the ami stuff and send it to her with a snotty letter. If nothing else it should help to make you feel a bit better and stop her giving wrong information and advice about this drug to anyone else....

In the meantime please take care and keep posting here. You will get your fight back Liza. This is a temporary set back. Dont let it bring you down....

Loads of love
Joan style_emoticons/<#EMO_DIR#>/flowers.gif

[oesa]

Hi Liza - I'm so sorry about your rheumy appointment.

I've had this ridiculous disease for over half my life, and I can tell you that unfortunately, the docs who don't get it outnumber the docs who do. You do need to try again sweetie - good docs ARE out there, it just sometimes takes more than one try to find one of them.

I also wanted to say good for you for looking up the amytryptiline information. You should DEFINIETELY mail it to that doc, and I'd even highlight the appropriate sections...

Take care, and don't give up!

Lisa

[helloos]

Hi there.

I agree with everyone else, you need to get another doc and write this off to a " a doctor who went to funny farm school".

I think that if the amitrip is not helping you then why not get off it? I thought people just took to help sleep anyway. I agree that maybe the neurontin would help more.

As for the skin burning. I have that. I do not take either med. I have no clue why it happens. I also heard that with Fibro you can have skin burning, but I don't have that either. I don't know if from Lupus but I do just say probably from that cause can't figure out why else. No one can either. It is annoying, and nothing helps it.

Sometimes it is bad, other times not there. But for me, it is mostly arms, upper back, sometimes legs.

I hope you find another doctor who will treat your symptoms rather than just say can't help you.

Don't give up as many are told this and you need to keep pursuing it yourself because they do not lose sleep from it when they go home, but it is your body and only you will continue to suffer. So continue on and find someone else until you find someone who listens and tries to help you.

[Mariposa]

<span style="color:#990000">style_emoticons/<#EMO_DIR#>/shakehands.gif Hi Liza,

Lately, I've been thinking that we are just numbers to them. style_emoticons/<#EMO_DIR#>/tantrum.gif ...with dollar signs.
If nothing else, I think your doctor should of at least given you other medicine options or referred you to a pain specialists, just like the other ladies said.

Maia mentioned the medication: Neurontin. I've been prescribed that one too; I've also heard it's a good one. style_emoticons/<#EMO_DIR#>/wink.gif
My neuro prescribe me Neurontin and aspirin because I've had spontaneous nerve pain and burning skin sensation (like hot coals) in the past. Now those awful sensations have ceased. They've told me that it was due to the high steroids dose I was taking. This side effect faded three months after I was taken off the steroids. Have you been on steroids before?

I don't know if this might help, but I hope you feel better soon and I'm sorry your doctor's visit did not help your pain. style_emoticons/<#EMO_DIR#>/hugbetter.gif

Butterfly hugs style_emoticons/<#EMO_DIR#>/flowers.gif </span>

[laker]

Hi Liza,
I am so sorry, I have sat and cried in this situation as well, and nearly given up on my health. Don't give up - you need to try drs. until you find the right one. Think how great it would be to know what is wrong and how to cope with it. It will be worth the hard work. Have a good cry, get mad at the doctor who upset you, and then start checking resources online and otherwise to find someone really good. Oh - and see if they will let you try neurontin. It has helped me a great deal. Any step you take now will be a step forward.
Take care,
Laker

[mcloughlin]

i was going to say unbeleivable but have since learnt that when seeking answers to question that they cant or wont answer we can be treated in a terrible manner, thankfully i have just got a new doc who is understanding at the moment. marianne

[mcloughlin]

please keep going when you feel strong enough and if you have a bad day well i come and visit here and soon i feel so much better, marianne

[katinka]

Hi Liza,

I am very sorry to read about your dr appointment. It is frustrating that there are dr's out there who seem very laissez faire about their patients health and issues, which should be their #1 priority.

I understand your disappointment, anger & depression fully - I do however agree with many of the others who have responded that you should please switch doctors!

I am new here and only just learning about Lupus (with lots of help from the great people here on this site); but from what I have gathered, a good Rheumatologist is worth the hunt and can help his patients. Sometimes he/she is just harder to find it seems.

Please look for another doctor and don't give up hope.

I think it is fabulous that you researched your medicine and I would definitely call your doctors attention to your findings.

Hang in there, take care & I hope you find a good rheumy soon! (...and maybe a better neuro too...)

Take care,

Karin