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lisabeans
@lisabeans

Posts: 85
Joined: Feb 13, 2017

Help!

Posted by @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.

REPLY

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.

@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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Thanks. The second rheumotologist keeps saying give the medicine time to work. I just want to get some relief to feel human again.

@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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My computer crashed while I was typing, sorry. I take prednisone for my polymyalgia rheumatica (PMR) and it helps with the pain in my shoulders, arms and hands. I think it also reduces the inflammation in my feet and legs and is associated with my PMR. I also have small fiber peripheral neuropathy (SFPN) with numbness only in the feet and ankles. I tried gabapentin but after 2 weeks of it doing nothing for my numb feet I questioned the doctor who brought in her team leader. Once I told them my symptoms were numbness and tingling but no pain, he said the gabapentin only helps with the pain.

If you are taking gabapentin, it can help with the pain but will do zero to help with numbness. It also tends to require higher doses to handle the pain over time. Not sure if the body is adjusting or why, or if it’s different for everyone. I have no medical background and have found all of my information doing research for myself. Your symptoms sound a lot like peripheral neuropathy. Have you seen a neurologist? I would definitely have a long chat with your rheumatologist and press him/her for answers. If they don’t have any, it may be time to seek another opinion.

Easy to understand explanation of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:

I would make a list of all your questions and take them with you to your doctors appointment. It will help you get you questions answered. It’s sometimes easy to forget when you are there and listening to what they are telling you.

John

Liked by lisabeans

John, Thank you so much! You are so knowledgeable and helpful. I have not seen a neurologist and no one ever suggested it. I see rheumy #2 Sept 6. I will keep you posted.

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

She gave me a pamphlet on fibro and suggested the aqu therapy. She also blames every pain to fibro. Even the feelings I have been gettong in my legs.

I think aqua therapy could be beneficial to help you keep moving and not give up on mobility as i’m thinking it doesn’t hurt as much (but I could be wrong). Some people in our neuropathy group for the Minnesota Neuropathy Association have benefited from therapy pools – http://neuropathy-mn.org/resources/.

If they think it’s fibromyalgia, I would want to learn everything I can about the condition so that it will help you understand all the alternatives that may be available and it might help you ask better questions of the rheumatologist so they can better help you. My favorite site for doing in depth searches for information is Google Scholar – https://scholar.google.com. It allows you to sort the information links by the latest year and find articles that are more current. I did a search for “fibromyalgia treatment” on Google Scholar and came up with quite a few interesting links that may be helpful if you have some time to look at a few of them:

https://scholar.google.com/scholar?as_ylo=2017&q=fibromyalgia+treatment&hl=en&as_sdt=0,24

John

John.
You are such a blessing. With 4 kids and a husband on disability, I dont dedicate enough time to me. I will check the links you sent. Thank you from the bottom of my heart!

@lisabeans

John.
You are such a blessing. With 4 kids and a husband on disability, I dont dedicate enough time to me. I will check the links you sent. Thank you from the bottom of my heart!

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You’re welcome, thank you for the kind words. I can’t imagine how hard it is for you, especially with 4 kids and your husband. I think it’s probably pretty hard on them also due to seeing you in pain and not knowing what to do. My wife is my biggest support and has been a blessing for me with my health issues. I’m very fortunate that she is very healthy and active.

Hoping you find some answers that will help…John

Liked by lisabeans, jeriliz

Thank you. I am so glad your wife is such a great support system for you. I wish you a pain free day!

@lisabeans Might be small fiber polyneuropathy. Maybe discuss with the PA or MD and seek testing with a “sweat test” or skin punch.

Thanks. No one has mentioned that before. I looked up the symptoms and of course it fits me as does symtoms for most conditions.

@lisabeans Spend some time at http://www.neuropathycommons.org/media reading and listening.

I am so greatful for all the help and support you all have given me.

@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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John- I too have fibro & have clicked this mayo discussion link a number of times & it says “oops! Not here”
Help?!

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