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#1 froggy

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Posted 08 October 2010 - 05:56 AM

Hi Everyone. A few weeks ago my rheumatologist put me on Plaquenil, told me to continue the pain medication I was on, but she wanted me to cut down on some because she was worried about my stomach and liver. The problem is that what I was taking never took away my pain anyway, just made it tolerable.

So over the past few weeks I stayed about the same with symptoms. Over this past weekend, I felt better than I have in several months. I was using half of the pain medicine I would normally take, and it was taking care of the pain. Then on Tuesday afternoon it was like I ran into a brick wall. I was feeling great, then an hour later, I couldn't pry myself off of the couch. Just squirming in pain. I finally called the Ruematologist yesterday and she said that she wanted me to begin a low dose of an antidepressant at night to sleep, and that this should help with the pain. She also said that she did not want me to take any pain medicine after noon, as she did not want me on it when taking the anti depressant.

So here I am, in horrible horrible pain, and she tells me to cut down on the pain medicine (that isn't working well in large doses) and to go on an antidepressant. I told her that antidepressants make me depressed, her response was "Really?", as if this was a really strange reaction. Is it? I don't know!!

I don't want my rheumatologist to rue the day she met me. I also need some answers and relief. What do I do? I called her office today and the nurse who answered the phone said that if I'm in that much pain the Doctor will most likely tell me to go to emergency, but that she would give her the message. What should I do?? If I go to emergency they'll put a band aid on the pain, and I'll feel like I do now, tomorrow. Are there things I can ask them to test for? Am I being an intolerable patient?

I thought I had bronchitis a few weeks ago (was treated for it). They did an x-ray and said my lungs are clear. I still cough every morning and have a hard time catching my breath. My chest hurts all of the time. Could there be something with that? I just wish they could find something that would give them the heart to know that I'm in bad shape, you know?

Thanks for reading this. Peace and blessings, ~Andrea

#2 Amanda Thorpe

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Posted 08 October 2010 - 08:31 AM

Hello Froggy

Scleroderma can cause chronic pain and acute pain but not normally sustained episodes of severe pain, does your rheumatologist put the pain down to scleroderma? Whether you need to go to the emergency room or not can only really be determined by you but either way you certainly need to discuss things with your rheumatologist. If you think she is cutting your pain medication down to soon you need to say so and if you are taking the correct dose of the appropriate medication why is she so worried about your liver and stomach? Sure everything has side effects but you have to weigh that against the benefits.

Some antidepressants can help with nerve pain which may be why she has prescribed them.

What I wouldn't be concerned about is whether your rheumatologist will "rue the day" she met you, her feelings are not your concern. It's her job to be your doctor which includes providing answers to your questions which I think you need to be asking. We shouldn't be worried about whether our doctors like us or not because if they are professional and execute their duties properly it doesn't matter whether they do or not.

Take care.
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#3 enjoytheride

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Posted 08 October 2010 - 09:05 AM

I'm not sure this is of any help to you but I usually have an increase in pain whenever I change some medication. It seems that my body takes some time to adjust to reductions in meds especially.

But do you think you might have pneumonia? The coughing and trouble catching breath would concern me. Pneumonia can be a sneaky thing.
You don't mention what kind of pain you have. Is it joint or bone pain? Stomach pain?

#4 miocean

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Posted 08 October 2010 - 04:24 PM

In regards to the cough...

There are posts on the cough. I went through months of coughing, even at night. It got to the point where my husband slept in a different bedroom because of it, I would wake him up. It began when the cooler weather started in September, last year. My scleroderma doctor said it probably wasn't my lungs as all my tests and scans remained the same and said it could be GERD or from Pulmonary Hypertension. I had a heart catherization in January and have mild PH. My doctor suggested getting a wedge pillow to raise my head at night for the GERD. I never did that because in March I had the kidney transplant. I stopped coughing for two reason: one, I coughed once and it hurt so much I didn't do it again, and two, I was in a hospital bed with the head raised. I never did get a wedge pillow and do not cough anymore but as the cooler weather is coming I am wondering if it will happen again.

As far as the trouble breathing...I have been on and off oxygen due to interstitial lung disease. I noticed something new around the time I was diagnosed with PH. When I laid down in bed, I would be short of breath (no exertion.) This is one of the symptoms of PH. It still happens, I go to bed and breathe heavily for a few minutes.

If it were me I would investigate the possibilities of GERD and/or PH.

I hope you feel better soon and that something helps the pain.

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#5 judyt

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Posted 08 October 2010 - 09:20 PM

Hi there,

Just read your post about pain relief. I don't have pain as part of my CREST but I have had times of it for various other reasons and I do know that some particular antidepressants do help to relieve pain. In particular, the one I know about, is amitriptyline. It may be an old fashioned one now that prozac is on the market, but it can do the trick if it suits you.

You didn't say which antidepressant was suggested and maybe you were so surprised you didn't get to ask. Most people probably know by now that Ritalin started out as an antidepressant but it has turned out to be an excellent treatment for ADHD which seems to be a contradiction. It is easy to get caught up in the connotation of a name and forget other facets of a drug's treatments.

Warm hugs from NZ,

Judyt

#6 froggy

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Posted 09 October 2010 - 02:35 AM

Thank you all for your posts. I do feel a good deal better today. It certainly seems to come in waves.

Amanda, No the doctor did not say the pain is from sclero, because I don't even have a diagnoses of scleroderma. I had a bunch of blood-work that came back negative so she gave me a diagnoses of connective tissue disease and possible fibromyalgia. I do not have pain in the tell-tale pressure points for fibromyalgia. The intense pain began several months ago, after a bad stomach bug. I had begun with joint pain before that. Weird things like my feet would just ache and hurt intensely for no reason. After the bug, the joint pain almost never goes away and is in all my joints. I feel now, as well, that I have a flu all of the time. I hurt/ache from head to toe. My Raynaud's went into overdrive after that virus as well. I'm concerned about my doctor's feelings because I don't want her to think I'm a lost cause and give up. "Everything I try for this girl does not work. When I want to try antidepressants, she won't take them... what can I do for her?" She never called me back yesterday, is she mad because I didn't take the antidepressants? These are the things I think about. Thank you for responding to me Amanda.

'Ride, I don't know, could be the medication. I've been trying out new medication these past few weeks. The one that I've been steadily on is Plaquenil. I was thinking pneumonia, but I did just have an x-ray about a month ago and everything was clear. Perhaps the antibiotics they gave me for the bronchitis did not work as well? I don't know. Thank you for that, it's definitely something to keep in mind.

Miocean, did you just keep telling your doctor about your troubles and she/he did a test? I told my rheumatologist about it and she didn't seem to think it was a big deal. Thank you for that information.

Judyt. Amatriptyline is what she prescribed! She said just what you said as well: "It's just a good old fashioned drug that works well for a lot of people." The only reason I'm afraid of it is that I have been prescribed anti-depressants in the past, and have not done well on them at all. In fact, almost everyone in my family has been prescribed them at one point in their life, and have not done well on them. I feel suicidal on them, and it doesn't take much medication to get me there. The other thing is that she wants me to stop the pain medication in the afternoon so that I won't be taking it with the amatriptyline. This scares me because I tried not taking it the other night, and that's when I ended up in excruciating pain. Perhaps she will call me back on Monday and I can tell her my concern with that? Maybe that's a sign for me to take it. Out of all the medications out there (antidepressants), you mentioned the one that she prescribed! Thanks Judy.

Thanks again to all of you for baring with me! Peace and blessings to you.
~Andrea

#7 Joelf

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Posted 09 October 2010 - 04:58 AM

Hi Andrea

Like Enjoytheride I also wonder whether you could have pneumonia or at the very least a chest infection?

Although I have no medical knowledge I do have interstitial lung disease and am quite familiar with the dry cough that accompanies it. I am sometimes short of breath and my lungs hurt if I really exert myself hard, but when my chest has hurt as you describe I've normally found that I've developed a chest infection which sadly I seem to do more frequently since being on immune suppressants. In fact the local consultant I see has prescribed a course of antibiotics for me to keep on standby should I need them (which I almost certainly will sometime during the coming winter!! :rolleyes: :angry: )

I can't advise you on the antidepressants as thankfully I've never had to have them.

I do hope you soon feel better and that the pain eases. :emoticon-hug:

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#8 Jeannie McClelland

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Posted 09 October 2010 - 06:29 PM

Hi Andrea,

You might ask your doctor about being referred to a pain clinic or pain specialist. They specialize in managing pain and often come from other specialties like anesthesia, neurology, psychiatry, etc. The one I saw for several years was a specialist in physical and rehabilitation medicine and I found her to be very helpful.

Many non-pain specialists are often uncomfortable in prescribing pain medications for long periods of time and/or at high dosages. From my reading I gather there is a growing concern about the prescribing of pain medications and I think many doctors are becoming more cautious in prescribing them, even though they may seem warranted (and I think this is unfortunate) because of possible legal issues down the line. Also, I think many medical practitioners still aren't making the distinction between addiction and dependency and may be afraid of enabling an addictive personality to "legally" feed their habit.

Another thought is that some of your recent pain might be due to coming off or substantially decreasing your dosage of pain medication in a short period of time. I developed an allergy to the pain medication patches I had been using and had to come off them. The doctor put me on another medication, but I didn't start it soon enough and went into a form of withdrawal. Believe me, it wasn't pleasant! Pain? Wow~

I hope things get better for you soon. I'll be holding you in my thoughts.
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#9 Mickikid

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Posted 10 October 2010 - 02:10 AM

I just wish I could find a doctor who BELIEVES my pain and is willing to TREAT it....quality of life...0

#10 miocean

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Posted 10 October 2010 - 03:20 AM

Froggy,
After my scleroderma crisis I was put on a GERD medicine. I had never experienced heartburn or reflux but was too sick to question it, I just took it. At one point I decided to stop it on my own and got heartburn so resumed it. I have been on different ones throughout the years. I have had several endoscopies and do have a hiatial hernia but it doesn't cause any problem.

I went to my general practitioner about the cough initially. He gave me antibiotics, had a chest x-ray done and it was fine but the cough didn't go away. As I said, it stopped after my transplant.

I've had shortness of breath since diagnosis and even though I am off oxygen find that I have to catch my breath after climbing stairs (we live in a multi-level condo with a lot of them) or if I am talking too much. My December CT scan will show if there are any changes in my lungs and from that it will be determined whether or I need another heart catherization.

My general practitioner has no problem prescribing pain medications. I am not in pain on a regular basis and when I am take Tylenol, which is the only OTC I can take without doctor approval since my transplant.

I hope you feel better.

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#11 jillatk

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Posted 10 October 2010 - 07:24 AM

All antidepressants are not the same. The most modern - prozac, paxill etc are SSRI's - Selective Serotonin Reuptake Inhibitors. Amitriptyline is not in that classification, it is a Tricyclic antidepressant. You may be better able to tolerate a tricyclic than an SSRI (most folks do). My doctor has prescribed me a low dose of a tricyclic at night for pain and it has really helped me. The other thing that tends to help my pain is gentle exercise. It causes your brain to release neurotransmitters that are natural pain inhibitors. One other thing I use almost daily is meditation. It helps clear the mind and settle my body. I know the pain can really take it out of you. Keep working on finding things that work for you.

Jill

#12 Amanda Thorpe

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Posted 10 October 2010 - 07:58 AM

Hello Froggy

Of all the things you may worry about don't let whether your doctor likes you or not be one of them!

If you have no tender points wht did she base a fibromyalgia diagnosis on? Have a look at some of the imformation we have about fibromyalgia, one study suggests that women with fibro feel pain more acutely.

Sorry I missed that you have MCTD rather than scleroderma, that said they're both connective tissue disorders and a scleroderma expert would easily treat both. If you are not seeing a scleroderma expert maybe consider seeing one?

Referral to a pain management clinic is a sound idea, maybe ask for s referral?

Take care and keep posting.
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