[kim5010]

After many years of being ill without anyone putting all of the pieces together, I have finally been diagnosed at the Lupus Center of Excellance in Pittsburgh. I am on plaquenil and currently weaning down from prednisone in order to start methotrexate by the beginning of September. Once they figured out I had polymyositis the rest of the puzzle seemed to fall into place since all my lab work was all over the place, instead of being definitely lupus, schlerderma, or RA. It's just all of the above combined. THRILLS! Now I'm feeling like a lost soul even though I have been preparing myself for this for what seems like forever. The pain doctor I saw Friday just looked at me and said "There is nothing I can do for you ... you'll just have to get used to the pain." Needless to say I felt totally disserted and cried. Narcotics do nothing for me, celebrex nothing, the only thing that helped was the prednisone ... now that it is weaning down all the pain is back with a vengence with the darn night sweats.:worried:
I'm trying to be optimistic but it's really hard.
Thanks for letting me vent!
Kim

 

[sadieone]

Hi Kim,

I feel for you. I remember when my doctor said the same thing basically. He gave me prednisone and said it will make you gain weight so you have to try and lose weight. Then he said I should get my file and find someone to work with me.

So i did just that.

A friend of mine told me of the pain and arthritis center in maryland where i live. I have been there ever since.

That doctor you see may be limited in what he knows about lupus and MCTD. I too have MCTD and Fibro and my doctors, GP and Rhuemy have had me on anti depressants like cymbalta, and amytriptilyne. There is also another drug that is said to help the fibro pain and that is Lyrica. Then their are your ordinary pain killers like tramadol,, ultram er. I am on all of the above except cymbalta and lyrica. That was the one ther helped the most but had me with a bad case of restless leg syndrome and talking a lot in my sleep. I tried it a number of times, each time different dosages. At the lowest dose i cause me to have mad constipation, excessive sweating and made me sleep too much. Lyrica makes you gain weight so that was not an option.

You just have to find that doctor that is knowledgable in your case.

Celebrex, helps greatly with my joint pain. If i don't take it daily, after a while my hips, knees and back all feel like they are broken and rubbing up against my nerves and skin inside.

I do'nt take metho, but hear people having some success with that.

I will have to strongly advise you to seek another doctor who can treat your fibro and willing to treat it with success.

Not every rhuemy knows how to treat lupus or MCTD and a lot of doctors don't believe one can have fibromyalgia. They say its all you our heads. Boy,, there are a lot of people out here who don't know each other that have to same issue with their health! What a coinky dink.
A lot of doctors just work with arthritis and the elderly. My GP knows more about how to treat my fibromyaglia than my rhuemy does.

I urge you to keep searching for someone who can help you find a better quality of life.

Good Luck and keep us posted.

 

[kim5010]

Hi Sadie, thanks for your reply.
I can't take the Lyrica or cymbalta because I have a seizure disorder and a heart aneurysm, so that takes them off of the table. I am trying to get an appointment with a pain management clinic closer to where I live. If all else fails I guess I can try to get my GP to give tramadol a try. I go back to the rheumy in Pittsburgh the first week of sept to start the methotrexate. Maybe I can last till then .... I doubt it the way this is going though.
Thanks again for your input, I would have been A LOT worse off if I hadn't found all of you and kept reading the forums while I've been going through this process! It's been a LONG year! All of you have given out alot of good advice and first hand knowledge that people new to this really need when starting off on this bumpy road.

Thanks!!
Kim

 

[sjink]

hi kim

What a hard week it is for you, coming to terms with this diagnosis. It is not easy I know. Sounds like they are doing what they can with meds though and having a centre of excellence is a real bonus (I go to one in England and it really does help prop me up!)

I am so sorry you have this pain problem. I too deal with a lot of pain although pain meds help a bit they are never enough.

One thing that really helps is having been on a Pain Management course. The one I went on was based on Mindfulness Meditation and the work of John Kabat Zinn. I cannot recommend it highly enough. I used meditation cd's - a body scan and a breathing meditation which help me to cope when the pain is otherwise unmanageable. The best book about it is called "Full Catastrophe Living" and there are several chapters on managing pain. There is another good book by Darlene Cohen which has a similar emphasis, can't remember the title and I have lent out my copy.

One thing I learned, which I often forget to do, is to PACE myself and take lots and lots of short rests. When I forget to do this the pain is much worse.

My GP always says he thinks I should try to cope without tramadol, I take codeine and paracetamol. He wants to have it to use if I get into a more painful flare.

Ho hum,
Sending you gentle hugs
Sara
x

 

[Clare.T]

Welcome to the forum Kim

I am sorry for all you are suffering and appalled by the pain doctor's comment. While people often feel relief at having a definite diagnosis it is easy to forget this is the start of a new phase that can be just as difficult - finding the right meds.
It is rather puzzling that they are getting you off the Prednisone before starting the methotrexate since this means another month or so of possibly unnecessary suffering perhaps with serious lasting effects on life, for example one month's poor work performance or absenteeism could compromise keeping the job. When the methotrexate kicks in it should be easier to reduce the Prednisone.

If you haven't been on the Plaquenil for long, it takes several months to kick in fully.
There's another antimalarial called Quinacrine whch can be very usefully added to Plaquenil for arthritis and general disease modification.

I am also a great fan of " Full Catastrophe Living" and read it from time to time just to remind myself of the principles. I'm not familiar with Darlene Cohen's writings but here is the amazon page mentioning some of them
http://www.amazon.co.uk/s?ie=UTF8&search-type=ss&index=books-uk&field-author=Darlene%20Cohen&page=1

If you decide to order please remember that orders placed through this site earn some money for maintaining it.

Wishing you lots of luck, strength and hope. Better days usually come.

Bye for now
Clare

 

[kim5010]

Thank you all for the book recommendations. I just went and placed my order.

Clare, I am retired from the military so don't really have to worry about not being able to hold a job, I just have to make sure the bills are paid each month from what I get as retirement pay. Thank goodness at this point!

Also, I will be down to 5 mg of prednisone by the time I see the rheumy. I am trying to not be such a baby about all this but dealing with all this pain and muscle weakness is just very draining. I just want to go find a cave somewhere and hide from the world at this point. I was always the one taking care of everyone else, raised two boys all alone and took care of everyone else. I am trying to decide whether to call my GP and push for something stronger for a while. Does that sound reasonable? He did give me a script for Lortabs about 7 months ago. I only take them if my pain level gets up to an 8 but they barely take the edge off. :worried:

Sorry this is so disjointed .... my neuro symptoms are starting to come back as well as my prednisone goes down. I'm just thrilled!!!

Thanks so much for all your help!

Kim

 

[Katharine]

Hi Kim,

I agree with what the others have said about that doc and his comments

I'm a little worried about this thing of reducing pred when you are still so obviously not good.

I was put on imuran in addition to plaquenil BEFORE reducing my pred. Only when the imuran had kicked in did the doc try reducing the pred. Now here the operative word is try as unfortunately (like you) I had worsening symptoms. Mine were pretty severe breathing problems. Thankfully my neuro symptoms are quite mild so, although they worsened a bit, that wasn't a problem.

Anyway, the problem with all that is that it took 4 months to get over that bad patch caused by the pred reduction.

Please don't let things go and please go and see your GP and, if necessary, get in touch with your rheumy's office. You must complain and don't let anyone tell you you'll be fine if you don't feel it. The consequences can be quite serious, at the very least months of setback which you really don't need.

By the way I have lupus with a polymyositis overlap.

Katharine

 

[sjink]

Hi again Kim

Twice when I tried to reduce pred my symptoms worsened and my rheumy stopped the reduction. I was relying on just that for a while as I am allergic to plaquenil. I have been off pred for 18 months now, it was OK at first but my symptoms have worsened, not only the pain and muscle stuff but also my mood, memory blah blah blah. So I am thinking that perhaps for me a low maintenance dose of pred might be what has to happen.

Dealing with pain is draining you are right and I have found that if i take my pain medication regularly (in my case every four hours) it is far more effective than waiting until the pain starting screaming at me before I take it. I know different meds to mine may not work that way but my doc said that is the best way to take paracetamol and codeine.

There are a couple of podcasts free on iTunes by Darlene Cohen I found them last night. She is a Zen Buddhist but you can listen to them without even really knowing that. One is on suffering (pain) and one is on pleasure, both of them relevant to dealing with chronic illness and the pain that goes with it. She has severe rheumatoid arthritis and runs workshops in the US with a lady who has lupus! The book I had has been renamed and has the title "Turning Suffering Inside Out", I notice on her website she also does CD's of her body awareness and other meditations which I have used from a book.

The CD's I use to help are available here:
http://www.breathworks-mindfulness.co.uk/meditationcds.asp

They are produced by the people that trained me and are very good.

I listen to podcasts most nights when I can't sleep, I have then turned quite low and choose a peaceful topic and it takes my mind of the pain which in my case is worse at night. I often do a body scan meditation last thing at night. The recommendation is to do one a day and sometimes it is the only time I fit it in.

Love to know how you get on with the books.

Take care
Sara

 

[kim5010]

Hi all! The rheumy said he has to get me off the prednisone ASAP because I have osteoporosis already and that my bones seem to be thinning very rapidly. He seemed very concerned about this since I am only 50. He wants me to TRY to hang in there and put up with the pain until we can get things figured out. From my point of view it looks differently of course! Constant pain that just goes up and down in intensity all day and all night can't be just "put up with" as easy as he thinks. Well, I am going to stop into my GPs office today and see if I can get a script for something else for pain. Keep your fingers crossed!

Thanks!

Kim

 

[helloos]

It is for sure, totally unacceptable to say " deal with the pain, nothing they can do" . I am surprised this doctor still has a job working in a pain clinic and saying that.

There is always something that can be tried from medications, to meditations, therapy, pain clinic, self help, massage, etc. etc.

Don't give up. I am glad that you are going to your gp and hope that you get some pain relief there. Everyone gave good suggestions and if you can, I would also try another pain clininc in your area if you have that option.

I hope you can get some relief with your gp. Let us know. Hope you feel better.

 

[kim5010]

Hello all! Just wanted to let you all know that I got the book yesterday
" Full Catastrophe Living" and started it last night. The GP only upped my Lortabs ... he doesn't feel comfortable giving me anything else ... says it's the rheumys job to do that. Anyway, I'm hanging in here and trying to wade through these feelings of inadequacy and depression. I just realized it has been a week this morning since all this landed on me so very hard. Seems like a wasted week.....

Thanks for all your help and support!

Kim

MCTD, FM, Raynauds, ASA

 

[cad]

Hi Kim,
I am so sorry to hear about your stuggle at the moment.
It sound similar to mine, i am not long diagnosed with MCTD and am plaq already and am due to start metho. Have just been through a six week pred reduction.
As the dose came down the pain got worse and then the doc was going to leave me at 20 mg and start the metho. but ut has affected my oesaphagul reflux so badly that i could hardly get any food down so i have had to stop it.
Now too i am back to square 1. And i am sorry you seem to be feeling the same way.

Do you take any regular pain meds or any NSAIDS, i do but to be honest the NSAIDS have not really helped much.


I really hope that things improve for you.

You must keep plugging away at the docs and make them understand the extent of your problems.
I hope you manage to get some improvement soon.

Take Care

Good Luck

Cassie

 

[kim5010]

Cassie, thanks for the encouragement. Sorry to hear you are in the same mess I am in . I start me metho next week on the 3rd. My prednisone will be at 7.5 mg by then.

My pain level has definitely gone back up and my neuro symptoms are returning. I hate those the worse. I am trying to keep hopeful that the metho with help. I'm hoping it helps you too!

Keep in touch so we can see how each other is doing. OK?

 

[cad]

Thanks Kim,
I hope things get better for you too.

Take Care

Good Luck

Cassie