Help!

Posted by lisabeans @lisabeans, Aug 28, 2017

I have been going through auto immune pain for 3 years. I was seeing one rheumotologist when I have a positive ana (1:160 homogeneous). I have swelling, joint and muscle pain, brain fog, exhaustion (also have mild apnea), I get redness on my cheeks and nose especially in the sun or flourscent lighting, I also have vertigo, ulcerative colitis (in remission) poly cystic ovaries, reflux,. This rheumotolgsit has not diagnosed me since all my other labs have come back normal but says it is inflammatory since I respond well to prednisone. I decide to get a second opinion. This pa at the rhuemotologist office says I have fibro and not an autoimmune issue. She said since I am not swollen all the time it does not sound like inflammatory. Responding to prednisone is the only question for her. She made me stop taking arava (which helped about 60%. She put me on amatriptyline (75 mg). I don’t feel relief and it is going on a couple of months. I started aqua therapy for the past month. I do notice that the therapy seems to be getting harder and harder to do and my exhaustion is so high. I also have been getting a feeling of swelling on my legs from the knee down, (worse on right leg) that makes it hard to walk and it tingles. I get numbness and tingling in both hands and feet. I feel so lost and confused. I foresee a third opinion in my future. I am sick of feeling like a hamster running in circles around the wheel and getting no where.

@johnbishop

I forgot to ask if your rheumatologist gave you any suggestions for helping the fibromyalgia symptoms. Mayo Clinic has a little information that you might want to look at here: http://www.mayoclinic.org/diseases-conditions/fibromyalgia/diagnosis-treatment/treatment/txc-20317826

There is also a Fibromyalgia Pain discussion that you might want to join in on and read what other Connect members are sharing. It might be helpful and another group of Connect members who are sharing your symptoms. You can view the discussion here:
https://connect.mayoclinic.org/discussion/fibromyalgia-pain-28e002/bookmark/?ajax_hook=action&_wpnonce=03379e12b4

John

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Hi @zinniagal – that’s weird? I can click on the link and it takes me to the discussion. Try this one – it’s the first page in the discussion

https://connect.mayoclinic.org/discussion/fibromyalgia-pain-28e002/

John

P.S. – Zinnias have replace Marigolds as one of my favorite flowers. A girl at the office gave me a bunch of seeds she saved from her Zinnias and I put them in some outside pots and they look really nice. I’m going to try saving the seeds from the flowers and planting them again next year.

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@johnbishop

I forgot to ask if your rheumatologist gave you any suggestions for helping the fibromyalgia symptoms. Mayo Clinic has a little information that you might want to look at here: http://www.mayoclinic.org/diseases-conditions/fibromyalgia/diagnosis-treatment/treatment/txc-20317826

There is also a Fibromyalgia Pain discussion that you might want to join in on and read what other Connect members are sharing. It might be helpful and another group of Connect members who are sharing your symptoms. You can view the discussion here:
https://connect.mayoclinic.org/discussion/fibromyalgia-pain-28e002/bookmark/?ajax_hook=action&_wpnonce=03379e12b4

John

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Thanks John! My mom planted zinnias all the time when I was little & I still love them & plant seeds every year.

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@johnbishop

Hello @lisabeans,

Sorry to hear you have not found anything that helps you and it seems to be getting worse. I have swelling in my legs often with my right leg a little worse at times.

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I have autoimmune and my legs swell . My right leg worse. Its lymphodema so they say. I have to wear Compression socks but it doesn’t always work those socks. Sometimes I think by using the socks they swell more than without using them. Go figure. I’m not sure what’s going on but no clots.

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@johnbishop

I forgot to ask if your rheumatologist gave you any suggestions for helping the fibromyalgia symptoms. Mayo Clinic has a little information that you might want to look at here: http://www.mayoclinic.org/diseases-conditions/fibromyalgia/diagnosis-treatment/treatment/txc-20317826

There is also a Fibromyalgia Pain discussion that you might want to join in on and read what other Connect members are sharing. It might be helpful and another group of Connect members who are sharing your symptoms. You can view the discussion here:
https://connect.mayoclinic.org/discussion/fibromyalgia-pain-28e002/bookmark/?ajax_hook=action&_wpnonce=03379e12b4

John

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i am in love with morning glories. one year when i was 8 my father beat me so badly (again for no reason) and all my sisters were laughing at me. i was so cowed i limped over to a corner of the yard trying to hide.when i saw a tiny flower in the back corner. i went closer and saw a tiny light blue morning glory, all by itself as if it were waiting for me it was the most beautiful thing i have ever seen. .later in life i have planted morning glory seeds and enjoy my life where i am respected, to think that such a small thing can change an outlook on life and give hope when it was so very needed. see, even the very smallest things can help an outlook on life. this is peachbarb and i do suffer with the same ailments as you do. just wanted to give a little hope! with love

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@johnbishop

Hello @lisabeans,

Sorry to hear you have not found anything that helps you and it seems to be getting worse. I have swelling in my legs often with my right leg a little worse at times.

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Swollen legs hurt – and it ca be a big hurt. Are you sure you are using true compression socks or stockings? Do they go up to the knee? Do you stay on your feet too often? Even with proper compression socks you still need to be of your feet more than you are on your feet.

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@johnbishop

Hello @lisabeans,

Sorry to hear you have not found anything that helps you and it seems to be getting worse. I have swelling in my legs often with my right leg a little worse at times.

Jump to this post

Yes true compression socks. Mercury or 15 -30 with a doctor script. Socks help while excercise swelling decreases. Then some days it increases. I’m not sure why. The socks help my feet from cramping. I have lymphodema whatever that means…? The socks go just below knee cap. I don’t believe in on my feet a lot. Thanks soccerchick

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Have you considered seeing a functional medicine doctor? If you have one in your area I would set up an appointment. Also, have either of the doctors looked into diet, and your gut health? all that is important to start your healing journey.

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@lisabeans Hi, Lisa. Now, please don’t think I am going to dX your disorder. I would like to, but it would probably be wrong. I have LCPDD (Light Chain Protein Deposit Disease) so I think all autoimmune disease is Protein related, dX by getting a SERUM Free Light Chain test done (not plasma). But you should have one, anyway, just in case. But, you should be aware of the hospital rankings in various specialties. One list is at: http://health.usnews.com/best-hospitals/rankings . With any luck you can find a great one close by. The biggest problem is finding and gaining access to the best labs, with the most experienced personnel and the latest equipment. For instance, the Atom Force Electronic Microscope ranges up to about $100,000 in price, but nothing else will do the job. My guess is that only a dozen or so labs actually have one to sort out mis-folded protein molecules. Our local lab does not, so…….

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Thanks for all that information. I will look into it.

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