Author Topic: My second opinion....  (Read 3472 times)

YYC_ Mommy

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My second opinion....
« on: October 06, 2010, 01:18:17 PM »
I met with a different Rheumy this morning. I was looking for a second opinion as at my last appointment my  1st Rheumy said that all my pain was due to the disease and that I needed to lose weight to help my pins and needles, electrical pains as it was being caused by my muscles that are losing strength. He did not want to prescribe anything to me other than Plaquenil and did not offer any OTC options for my pain.

At first my 2nd Rheumy was upset as I was already seeing a rheumy. I explained that I wanted to hear her opinion. She said that since I was there she would examine me. She did so and did different tests than the 1st Rheumy, especially pushing on points in my muscles and on my back.

She is sending me for more tests! A bone scan and some x-rays as I did not have any x-rays with my 1st Rheumy and also more blood work.

She wants me to take Aleve at consisten times of the day, she said that if you are in constant pain you need constant medicine. She was at first going to prescribe a mild anti inflammatory but decided to have me start with Aleve because she thought it would be a more "quick release".

I asked her if all my pain and issued can be caused by Sjogrens and she said NO. She did not think that all my issues are from Sjogren's. So again I wait....lets see what this doctor can turn up if anything.

Bonnie

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Re: My second opinion....
« Reply #1 on: October 06, 2010, 01:51:41 PM »
Hope you have some luck with this new Rheumy  :)

Prairie Gal

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Re: My second opinion....
« Reply #2 on: October 06, 2010, 01:56:19 PM »
YYC, have you looked at the Sjogrens Syndrome Foundation web site?  There are one-pagers about the various symptoms we have from SjS, one of them definitely being pain.  There can be an overlapping of pain from Fibromyalgia, etc., so this isn't easy to pinpoint.  If you go to www.sjogrens.org and just click on "Survival Tips" you'll see a lot of good information.

Does this second rheumy have a lot of experience treating SjS patients?   Would she take offense if you were to print out the one-pager on pain and give it to her?  It's good information; she could learn that SjS patients often have pain.

puccini914

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Re: My second opinion....
« Reply #3 on: October 06, 2010, 01:59:31 PM »
I don't know what it is with all these Rheumy's telling people that Sjogren's doesn't cause pain.  Both my Rheumy and my neuro are fully aware of the full spectrum of pain issues that come with Sjogren's.  My biggest problem is that I can't take any of the NSAID's due to severe allergies, and I won't take anything that dopes me out too much since I have two very young boys,(3 and 8) to care for.  The only pain medication that has been good for me is Lortabs 10/325 and that has to be limited to 4 times a day due to the amount of tylenol.  Tylenol can mess up your liver as quickly as anti-inflammatories can mess up your stomach.  My Rheumy also told me that the fatigue of Sjorgren's is one of the most difficult to treat, that it really doesn't respond well to most types of treatment.  The Lortabs seem to help me a bit with that as well.  I wish you the best of luck.  Take care and feel better soon.

P.S. I think the second Rheumy was offended to be considered only as a second opinion, she was probably hoping you were coming to as a new patient.

lynnmarie219

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Re: My second opinion....
« Reply #4 on: October 06, 2010, 06:30:54 PM »
Good luck with this new rheumy. I hope you get some answers from the new tests she is running!

Keep us posted!

YYC_ Mommy

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Re: My second opinion....
« Reply #5 on: October 06, 2010, 09:18:29 PM »
Thanks guys!

It seems like I am jumping on a Merry-go-round that I have heard so many of you on. I really just would like some help with the pain. You can call what I have Sjogren's or whatever you like. I just don't want to accept that this is as good as it gets, that I will continue to have pain all the time. Hoping that maybe Aleve will do the trick.

Who knows maybe this new Rheumy will find something, I suspect not. As many of you mentioned, we all know from reading from others on here that Sjogren's can cause pain.

irish

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Re: My second opinion....
« Reply #6 on: October 06, 2010, 09:29:39 PM »
I just want to add something about treatment of pain. I have pain intermittently so I know I don't suffer nearly as much as many of you do. However, I can feel like I am about to die from the pain in my body plus the Raynauds like pain I get in my fingers.

I heat up my rice bag in the microwave and put it in my lap or wherever my owie is and I can't believe how good it can feel. The pain won't go away, but there is just a comfort level that kicks up a notch. I am getting ready to make another rice bag out of the rice (not instant rice) and using an old sockof my hubbies. Somebody has a pattern or directions for this but I don't remember who it is. Maybe it is someone who is not here anymore. If you are still around would you please post it on this thread. Irish ;D

warmwaters

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Re: My second opinion....
« Reply #7 on: October 06, 2010, 11:50:36 PM »
Do be careful with the microwaveables. A friend of mine made a nice heating pad out of corn for me - similar to the rice approach. But recently I burned myself with it. I get pain in my armpit (lymph nodes), and fired the very nice heating pad up, then put it over my upper breast/armpit. Burned myself without knowing it (neuropathy can be a bitch).

So do be careful out there...
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

gphx

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Re: My second opinion....
« Reply #8 on: October 07, 2010, 12:34:15 AM »
Sounds to me as if the second rheumy has some experience and was probing for fibro sensitive spots on your back and muscles.
Dxed unspecific 'sicca syndrome' eyes and mouth. Neuro issues, muscle weakness. SS Seronegative but high inflammatory markers. Diabetes dx 2010. Glucose control improved neuromuscular issues. Enlarged thyroid under observation 2013. Yippee.

Patze

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Re: My second opinion....
« Reply #9 on: October 07, 2010, 05:07:36 AM »
Good luck and this rheumy seems to be a bit more proactive than the last one, and I'll keep the fingers crossed that she'll work out for you.


Patze
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YYC_ Mommy

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Re: My second opinion....
« Reply #10 on: October 07, 2010, 06:49:37 AM »
Thanks again guys.

I feel like my 1st Rheumy thought that I might have MS or neuropathy, then when those tests came back normal and it was JUST sjogren's in his eyes that it was just come back in 6 months and all my issues, pains are Sjogren's and I would feel better if I lost weight.

Hey I know that I should lose a few pounds. He said that if I lost 10 pounds I would feel much better. I asked what I should do as when I walk, I end up feeling in more pain so it kind of makes you feel like not exericing when you end up on the couch for hours or a day after. I have 2 kids that I have to take care of so it is not practical for me to be out of commission for any real period of time.

Now I am not saying that the outcome will be any different. Everything might be because of Sjogren's and I still have to ask about a skin biopsy for small fiber neuropathy. But it seems to me if my fingers are sore and changing colours in the cold, I ask about it and he says that it is all part of the disease. I KNOW from others on here that it sounds like Raynauds. Call it Sjogren's or Raynauds BUT at least tell me what I can do or not do, give a suggestion.Or that my pins and needles, electrical shocks and my hands, fingers or toes going numb are due to my muscles being weak and lack of exercise, OK maybe but I get this in my face as well, how do I exercise the muscles in my face. At least tell me that is might be due to lack of exercise 6 months ago so I could have already tried that.   

Maybe this all comes down to me and pain management. I just thought that I would get some more direction. I guess we will see.

Thanks for all your suggestions and support.




Prairie Gal

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Re: My second opinion....
« Reply #11 on: October 14, 2010, 01:57:33 PM »
YYC, one of the first questions my rheumy asked at my initial appt. with him was how was I sleeping.  I told him I often woke up in the night stiff as a board and aching; he prescribed Flexeril, a muscle relaxant I take 2 hrs. before bed.  It does tend to dry the mouth -- not good for Sjoggies -- but it's a trade-off.   The dryness was worse when I first started taking it.

I get 'pins and needles' in my feet and legs, plus sometimes the 'numb feet' feeling when I've slept poorly, so I know in my case there's a direct relationship between the quality of sleep and how I feel.

Since 1981 I've walked 2-3 miles most mornings and been in a twice-a-week exercise class -- 20 years before my SjS Dx.  I think it probably has helped me overall.  I still walk, though not as far or as fast and the exercise class emphasizes stretching -- including a few yoga moves -- rather than aerobics. 

The dr. is right  :) that exercise would help you feel better.  Maybe you can figure out something that doesn't make you feel so awful when you get done.  Have you tried walking for one block for a week and then adding a half-block more each week until you work up to about 20 minutes?   I know I feel better after I'm done; the first 10 minutes of my walk I often drag along.  Or maybe a  few yoga stretches would be possible.  There are DVDs for beginners.

Right now, my GP is trying to figure out what's causing pain in my left shoulder and upper arm.  When it's really painful and I can't get comfortable in bed, I don't sleep much and my SjS symptoms are worse the next day.  Talk about a vicious circle...

 I sympathize with your pain and hope you'll get some help with yours. 

YYC_ Mommy

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Re: My second opinion....
« Reply #12 on: October 14, 2010, 08:29:43 PM »
Thanks PrairieGal!

I have tried walking, in fact I have been walking my son to school in the mornings this week. It is about 15 minutes there and 15 minutes back for me. I end up in so much pain in my hips and back. My legs feel weak and heavy as well.

I have looked into some water classes that are for people with arthitis and I am going to try that.

I don't dispute that exercise is good and could make me feel better overall but I just don't want to be in more pain because I am trying to exercise.

I do know what you mean about a vicisou circle, I can totally relate to that. I do often wake up during the night due to pain. I never thought to bring that up to my Rheumy, I just speak about how the pain effects me during the day. Thank you for that insight.

I hope that you can get relief for your pain in your shoulder and arm.

Thanks again!

maria1

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Re: My second opinion....
« Reply #13 on: October 15, 2010, 07:04:02 AM »
YYC, one of the first questions my rheumy asked at my initial appt. with him was how was I sleeping.  I told him I often woke up in the night stiff as a board and aching; he prescribed Flexeril, a muscle relaxant I take 2 hrs. before bed.  It does tend to dry the mouth -- not good for Sjoggies -- but it's a trade-off.   The dryness was worse when I first started taking it.

I get 'pins and needles' in my feet and legs, plus sometimes the 'numb feet' feeling when I've slept poorly, so I know in my case there's a direct relationship between the quality of sleep and how I feel.

Since 1981 I've walked 2-3 miles most mornings and been in a twice-a-week exercise class -- 20 years before my SjS Dx.  I think it probably has helped me overall.  I still walk, though not as far or as fast and the exercise class emphasizes stretching -- including a few yoga moves -- rather than aerobics. 

The dr. is right  :) that exercise would help you feel better.  Maybe you can figure out something that doesn't make you feel so awful when you get done.  Have you tried walking for one block for a week and then adding a half-block more each week until you work up to about 20 minutes?   I know I feel better after I'm done; the first 10 minutes of my walk I often drag along.  Or maybe a  few yoga stretches would be possible.  There are DVDs for beginners.

Right now, my GP is trying to figure out what's causing pain in my left shoulder and upper arm.  When it's really painful and I can't get comfortable in bed, I don't sleep much and my SjS symptoms are worse the next day.  Talk about a vicious circle...

 I sympathize with your pain and hope you'll get some help with yours.