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Jocelyn - February 19

Hi All,
I am new to this forum and have been diagnosed with Fibromyalgia and Sjogren's Sydrome.

I have been suffering with the dry eyes from Sjogrens's Syndrome until the muscle pains over took the eye pains. At times, I wish I could cut my head and lower body off so that I could be pain free.

After visiting a great doctor at Mass Eye and Ear Infirmary in Boston, I now have eye relief, but am suffering from the Fibromyalgia and Chronic Fatigue.(although, since, I am not active, I really don't seem to be very fatigued.)

I am seeing a Rheumatologist at Mass General Hospital in Boston. He diagnosed me with all my medical problems. I am working full time, but have a sitting down job.

My fibro symtoms at this time are effecting my lower back, hips, legs, and the bottom of my feet. I have had fibro for many years, didn't know what it was, but just dealt with the pain, but the pain is now out of control. I've tried several medications over the years but the side effects have been bad for me as I need to work. I have a problem with drugs in the antidepressant family, so, I was put on Neurotin and ended up having an allergic reaction after a few months, plus my job performance went down. I am working with a p/t right now, but I can only do stretching, not muscle building exercises because it sets of the fibro so bad I can barely walk into work. My doctor has given me Lyrica and wants me to start on it right away and he will continue to up the dosage until he feels I am at the best level for me...that is if it works. However, after reading up on Lyrica, I didn't like what I saw. Especially the higher risk of cancer associated with the drug. Anyway....Just want to know if there are other lower back, hip, and leg pain people out there and what they may have tried to relieve pain.

I am taking Advil, 2.5 mg of prednisone, and Klonapin, I just came off of a long stint with Plaquenil, because my eyes are doing better and I did not feel it helped with the fibro.

I'm afraid I am going to have to quit my job and I carry the insurance, plus, I feel like I am going to end up in a wheel chair . I have a 5 year old German Shepherd. I used to walk him and his sister together up until they were two years old, now I cannot walk them at all. It seems to be progressing quickly and it is very scary.

Thank you all for any information you may have.

 

January - February 22

Hi Jocelyn, and welcome to the site. Sorry you are having such a bad time. There's a lot I would like to write to you about, but have to run off to an appointment. Just wanted to touch base with you. There is usually more activity in the General Discussion group.

There are people here who know about the combination of Sjogrens and fibro, so I hope someone will come on and talk with you. Like you, I did VERY badly on antidepressants and I will never touch another one. There are alternatives you can try, so I hope you will browse through the threads here. Also, you can plug any topic into the blue search box at the right - discussions will come up.

I see you posted three days ago, and no one answered -- hope you will keep coming back. This is a very good site, just sometimes busy and sometimes not!

It is really a drag to consider, but you might want to check into disability NOW. You have to file within a couple years of stopping work (something I didn't know) -- and, while you still have energy, it might be better to get the process going. If you can still work, fine. But if it turns out you can't, you will have the hard work out of the way before you get more disabled.

I know what you mean about your dogs. I went from having lots of dogs to realizing I could not take care of myself and them too. : (

You CAN arrest the fibro, and keep yourself somewhat healthy, I think… but you have to learn all you can, get pro-active and try alternate methods. Western medicine is not so good at treating chronic strange diseases like fibro. Don't let it get you down yet! Educate yourself. I managed to get a lot better by changing my diet and taking a lot of supplements. Acupuncture helped a lot too. And lidocaine injections into trigger points. Just my opinion, but I think the potent drugs the Western MDs throw at you do a lot more damage than good… Good luck with your journey.

 

Jocelyn - February 23

Hi January,

Thank you for writing me. I will certainly be doing more searching on the other groups for support and do need to find out how to start looking into disability. I would like to keep working, but one never knows.

If you have time, please let me know how you are doing. I will be back too.

Jocelyn

 

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