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Dr P. fibro pain/fatigue and fed up
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tlp2815 posted:
Hello-
I have been on about 20+ medications over the past 10 years for fibro. Some seem to work for a while then stop working. I am currently on Lyrica and it does not work for me. I have been on it for over a year. I have tried just about everything I can- hot baths, massage, chiro, paraffin wax etc. I have seen Rheumatologists, Physiatrists and Neurologists and I ended up with my PCP who seems to be the only one who cares. We are at a standstill and are not sure what to do next. I was just tested for food allergies and had a complete viral panel done on the advice of a "fibro expert". That turned out to be a wild goose chase and a waste of time and money. I am thinking that Savella is one of the only drugs that I have not tried and am a bit concerned due to the amount of possible side effects that I can get. I have 18 month old twins and am a stay at home mom so I need to be able to function and be able to take care of them. I cannot be taking a medication that makes me "out of it". Please help. Do you know of any new fibro medications coming out on the market soon or do you think Savella is worth a try?
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NotWorldly responded:
Glad you tried some alternative medicine techniques, but maybe you forgot nutritional therapy. Include in this, alkalinizing your body, mainly with green drinks/powders, fruit powders, veges (non-starchy) galore. Research how to change your pH to be alkaline. Helps with pain, healing, weight gain, other.
 
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Mark Pellegrino, MD responded:
Hi tlp2815,

Sorry to hear of your difficulty finding something that works for your fibro. It sounds like your different doctors and you have tried different strategies and you had specialized work-ups to try to figure out what may help.

I understand your frustration. I have patients who I've tried different meds and did different work-ups (such as looking for allergies, or certain viral infections), but without any improvement overall. We all feel bad in this situation as the goal is to do better. Testing that turns out to be negative can be both good and bad: good because no abnormalities were found, but "bad" because it didn't result in new treatment options.

Please consider that the evaluations you had were done to look for specific fibro-related problems, and if they were negative, that's actually a good thing.

Savella is approved for treating fibro pain, so it is certainly worth considering a trial. Your PCP could discuss this option with you and determine if you are a candidate to try it. As you know, there is no magic medicine that eliminates all fibro symptoms, so hope that you get a therapeutic response that helps you manage better with Savella or any other treatment you may try, even though you may still have pain.

I truly hope you can find something soon that helps your fibro. You are certainly due for something positive to happen! Good luck.

Dr. P
 
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booch007 responded:
Good morning,

I am going to chime in here with something I see in your letter.

Holy crap, you have two 18 month old children that you care for at home.!!!

This is a huge trigger for issues, you have little control over them pulling on you, your lifting of them and the crib in and out....it is exhausting and worse then an employed job.

I use savella and only 12.5mg as I couldn't go higher with side effects I love it. It may be helpful for you, but I see you have a huge trigger in the house and alot of work with the house as well, and laundry like forget it! This is a trigger for me too.

The keys in the toolbox we have is to pace and pace more, you need rest periods. So, for me I see you need to journal the days...and then look at what you can do different to not set your pain off so much.

THIS IS NOT GOING TO BE EASY. If it was easy, we would have all figured our lives out. My big trigger was 18 patients a day...I am down to 9-10 an what a diffenece!

I see it so clear. You will be better when they are older, but all you lift...the stroller, the car seats, the carry bag to go out.....
ALL of this adds up.

I am hoping a YOUNG MOM here chimes in with tools she has developed to survive.

Remembering we are never painfree at any time, you can do better...but a GOOD PLAN is a must here, always being a good Mom not just getting on the floor and jumping in with whatever they ask.

I have this as a grandma, I have found lines in the sand I CANNOT CROSS, but in love it happens anyway.

Your supplements, meds and food intake choices all add up to better, but what you ask your body to do in a day is also a major thing. maybe a "summer helper" a kid who needs a few dollars to be your hands? Try this and see if there is a difference for you. I was a summer helper for a neighbor when I was young.....so think of this.

Ok, chiming out.....Take care, I sure feel for you as I have a 3y/o and 12m/o to play with alot.....Hugs, Nancy B
 
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fibromomof2 responded:
You poor mom!! You sound a lot like me, but my kids are 5 and 2 now. I was working on top of it too until my body broke. I have not had any luck with my body reacting to meds either. And until I my youngest started szzzzz thruogh the night I had no hope!! I recently started topomax which is helping along with sleeping. I had never heard of it and went through a million docs and ended up with just my pcp, then I found a miracle young man doc who was not even staying with the pain clinic I just started at....so if I go back there and it is bad I will be following the new guy if it takes 6 months, hell it took me 6 years to find him!! Hope you get relief soon!!! I feel your pain litterally:( It is really hard to ask for help but it is ok and you deserve it.


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