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Cheryl Ann

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Joined
Aug 20, 2015
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221
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DX FIBRO
Diagnosis
04/2013
Country
US
State
MI
I'm worried about getting a flu shot. Many of you have talked about having large swellings at the site of the injection.
I have some new (new to me) autoimmune disease that they haven't identified yet. It causes extreme swelling. My GP said he thinks it has to do with my synovial tissues; that they are becoming inflamed. The first thing he thought of was RA. He sent me to my rheumy.

She ordered x-rays of my hands and wrists and also repeated the RA blood test that I have had 3 years in a row now. I understand why though. You never know what will be next or "when the other shoe is going to drop". Anyway, those were negative!

I know she is testing for an arthritis caused by Ulcerative Colitis. I think she has requested testing for Multiple Connective Tissue Disorder too. I'm not sure if she requested testing for Lupus.

I had the top notch, the best doctor in SWMI (Southwest Michigan) but one of the hospitals in town bought his private practice over the Labor Day w/e. I don't know where he is and due to a non-competitive law, he is unable to set up his private practice within 25 miles of his previous practice. While that's a real stinker, Id drive 45 min to see that doctor.

Meanwhile, the hospital hired a young woman right out of college. She was brilliant, thorough and kind. Both my husband and I really liked her. Unfortunately, she was only filling in temporarily...until Nov but she's already gone. She went back to Georgia :-(
I'm waiting for a new rheumatologist to move in and figure out his schedule.
I hope he graduated top of his class and has a great bedside manner.

The temporary rheumy wants me to start on Humira after I undergo the tests to make sure I don't have TB, which I've done and have come back negatory.
The reason she wants me to go on it is bc the drugs I am taking (lots of 'em baby, prob just like most everyone on this forum) don't work so great when I have a flare. Besides debilitating pain, I also have that darn extreme inflammation, which can be more debilitating than the pain maybe. I don't know. Maybe its a combination of the two. Did I already tell you that? Boy! My memory!

Anyway, have you seen the commercials for Humira? Its a biologic which means it slows down your immune system since that is what is attacking you. However, it also means that you will be highly, yes highly, susceptible to most any illness, incl. TB and cancer.

Here's an excerpt taken from the internet: "Some people using Humira have developed a rare fast-growing type of lymphoma (cancer). This condition affects the liver, spleen, and bone marrow, and it can be fatal. Humira can also lower blood cells that help your body fight infections and help your blood to clot. Serious and sometimes fatal infections may occur during treatment with Humira."

Has anyone ever taken Humira or had this extreme inflammation?
 

Loftpat

Senior member
Joined
Aug 12, 2013
Messages
374
Reason
DX FIBRO
Diagnosis
08/2013
Country
US
State
ME
My mom has RA and has been taking biologics for years, including Humira. For her, they have been a lifesaver for unrelenting pain. We are all mindful of the immune issues. Having said that, I thought these were drugs when others don't work for RA and Ulcerative Colitis because of side effects, but I could be wrong. In my world, I'd be asking lots of questions. Have you considered waiting until you get a new steady rheumatologist before starting the drug?

I struggle with horrible inflammation as well when I have a flare. I take Indomethacin for cluster headaches so I boost my intake during flares, which provides some relief. (My stomach and liver are wrecks.) I've found that watching or limiting my intake of foods that can cause inflammation, like nightshades-potatoes, tomatoes etc., and adding more cruciferous vegetables, like kale, broccoli, has helped overall and made the flares more manageable. Tumeric is a terrific anti-inflammatory. My best fibro doctor recommended looking at diet and I bless her everyday. I may hurt like crazy, but I feel healthy!
 

Cheryl Ann

Senior member
Joined
Aug 20, 2015
Messages
221
Reason
DX FIBRO
Diagnosis
04/2013
Country
US
State
MI
Hi Loftpat. Thank you for responding. I will certainly be waiting until I get to know my new rheumy before I begin that drug. They haven't ordered my chest x-ray yet anyway.

What causes your inflammation? Are you saying it was caused by your diet or just partly?
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Gosh Cheryl Ann you have so much going on. You sound so brave as these drugs are not lightweights are they!

Please get as much information about them ...read...get second opinions etc if possible as its your body. Will the benefits far outweigh the risks etc?

It must be so confusing with multiple illnesses and maybe not knowing which is causing what pain.
 

Loftpat

Senior member
Joined
Aug 12, 2013
Messages
374
Reason
DX FIBRO
Diagnosis
08/2013
Country
US
State
ME
The inflammation is not caused by my diet (but it might be--more science needed!), but making changes in my diet has helped with inflammation, pain, and energy. Oh, I added some pro-biotics as well. Lots of good science being done about the gut-brain connection.

Inflammation causes: arthritis, trigeminal neuralgia and colitis. There's still some "mystery" from what I read about the inflammatory processes associated with fibro. I figured it made sense to try to eliminate foods that excite the inflammatory process and add more anti-oxidants. I have to eat, so eating well is better than adding more medications to the mix. Kale for flares!
 

Forgetmenot

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Messages
1,508
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Well my mum always felt so ill after her shoots that she now won't take it. She has polymyagie spelt that wrong.
The thing with the flu shot is u get last years virus and every year it changes.i guess it maybe does hit us harder.
 

Cheryl Ann

Senior member
Joined
Aug 20, 2015
Messages
221
Reason
DX FIBRO
Diagnosis
04/2013
Country
US
State
MI
Gosh Cheryl Ann you have so much going on. You sound so brave as these drugs are not lightweights are they!

Please get as much information about them ...read...get second opinions etc if possible as its your body. Will the benefits far outweigh the risks etc?

Thank you for calling me brave Willow. I don't feel brave. Good news though! The rheumy that I used to go to sold his practice to one of the hospitals in town and has been out of touch with all of his patients. Well, ok here's the good part, he's back. He has set up his private practice again only its actually closer to me now. They're setting up appts for him next week! I am so excited to get back in with him. He has 37 years experience and I want to see him as much as possible before he decides to retire.

It must be so confusing with multiple illnesses and maybe not knowing which is causing what pain.
It is confusing to me and maybe to the doctors too. I wanted to try to wrap my head around it all so I wrote down all of the autoimmune diseases that I have plus other conditions that are wreaking havoc on my body.
OA - Osteoarthritis
FM - Fibromyalgia
Allodynia (overall body pain and inflammation)
Arthralgia (joint pain)
Chronic Fatigue (not sure if its the syndrome or just another part of FM)
Angioedema (hives under the skin)
Myositis (pain and inflammation of the muscles)
RLS - Restless Leg Syndrome
DDD - Degenerative Disc Disease
UC - Ulcerative Colitis
TMJ - Temporal Mandibular Joint Dysfunction
Inverse Psoriasis (I get little red bumps on my eyelids, corners of eyes, and under my
breasts and "flat tire" of a stomach.)
------------------------------------------------------------------------------------------------------------
Dishydrotic Eczema (hard, little red bumps on my fingers here and there that are itchy
and painful)
Metatarsalgia - interesting cause: "Certain foot shapes. A high arch can put extra
pressure on the metatarsals. So can having a second toe that's
longer than the big toe,
which causes more weight than normal to
be shifted to the second metatarsal head.

Slight Scoliosis (at shoulders/neck and low back)
Chronic Rhinitis (no biggie right? I am always blowing my nose and have a permanent
open sore just under it.)

Menopause (I think this is what triggered my FM bc of the big hormone swing)

Okay, so 7 autoimmune diseases outright and 5 more caused by Fibro, plus 5 other diseases that cause havoc too.
 

Cheryl Ann

Senior member
Joined
Aug 20, 2015
Messages
221
Reason
DX FIBRO
Diagnosis
04/2013
Country
US
State
MI
Does anyone else out there have more than the one autoimmune disease - Fibromyalgia?
 

Cheryl Ann

Senior member
Joined
Aug 20, 2015
Messages
221
Reason
DX FIBRO
Diagnosis
04/2013
Country
US
State
MI
The inflammation is not caused by my diet (but it might be--more science needed!), but making changes in my diet has helped with inflammation, pain, and energy. Oh, I added some pro-biotics as well. Lots of good science being done about the gut-brain connection.

Inflammation causes: arthritis, trigeminal neuralgia and colitis. There's still some "mystery" from what I read about the inflammatory processes associated with fibro. I figured it made sense to try to eliminate foods that excite the inflammatory process and add more anti-oxidants. I have to eat, so eating well is better than adding more medications to the mix. Kale for flares!

Kale for flares? Alright! I love the Zuppa Toscana (sausage, potato, onions, kale) sold at an Italian restaurant. Can't same the name. Anyway, I've learned the recipe! Time to make Zuppa!:)
Thanks for the tip Loftpat :)
 

Sylvie10

Member
Joined
Nov 2, 2015
Messages
20
Reason
DX FIBRO
Diagnosis
04/2008
Country
US
State
TX
I have been trying to help myself with diet to. There's some good items that have helped like Costco makes a frozen dish. It's citrus quinoa and kale. It's really tasty and just needs to be microwaved for 3 1/2 minutes. It's pretty inexpensive too.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Cheryl Ann that is a lot of auto immune illnesses....i cant imagine how much time and testing you must have gone through to diagnose all of those. How do you ever know which is causing what pain as they all cause pain!

I think it would take forever or just not happen that anyone would get that level of expertise focused on one individual patient and most likely only one or two diseases/syndromes would be diagnosed.

What is myositis as opposed to fibro and anthralgia? I will google!
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
I have googled...oh wow not being a hypochondriac but i have so much more pain in joints and muscles i am wondering if i have more than fibro...the menopause is just starting for me too pretty late at almost 56 and maybe that has also had an impact.

Anyone on HRT? Does it help?

Maybe i will start a thread asking.

I won't have a flu shot ...i dont go out much and wash my hands when i get in and prefer no more hits to my weary body. I might regret it one day. I have never actually had flu and before i got fibro never got sick and had only been to a hospital for a broken foot and to have baby!
 

Cheryl Ann

Senior member
Joined
Aug 20, 2015
Messages
221
Reason
DX FIBRO
Diagnosis
04/2013
Country
US
State
MI
All of my illnesses developed over a long period of time. Like the TMJ and chronic rhinitis were the first issues back in the mid 80's I think. I have had the scoliosis at least since '83. I didn't even know I had it until I got my first job. I worked at the Juvenile Home and they had their doctor examine all new employees.
The RLS and UC came on when I started teaching in the Behavioral Conduct Disorder classroom. When all of my students went on to middle school, I transferred to another elementary school in the same school district. It was there that I had the most grief. There were a lot of people that were unhappy at that school and they weren't friendly toward special education. There were 2 bullies and another that was just always rude. It was after I left that job that I developed FM and the other 5 autoimmune disorders that seemed to just tag along.

AS far as HRT. I take estra-noreth which is estrogen and something else (which I should know). I take it for hot flashes. Okay here's a confusion I have: Are the hot flashes I am having now, even tho I am on HRT, due to menopause or FM? I used to think my body just had a hard time regulating my temperature. Now I'm not sure. Perhaps I need a higher dose of the HRT? I've been on it for a couple of years.
Then on the other hand, there are times when I just can't get warm enough. So, I guess I need to talk to my GYN and my Rheumy.

I know what you mean about feeling like a hypochondriac. I mean my husband and his father have both talked about it all being in my head. And I know when my niece developed FM, sometimes she was okay and could walk without her cane and maybe an hour later, or less, she didn't need it. People thought she was faking it and I am not "allowed" to talk about my illnesses bc then I'm complaining and making people uncomfortable or they feel sorry for me.
OH F***ING WELL!
I yam what I yam and that's all that I yam! ~ Popeye
 

blonde4938

Active member
Joined
Oct 20, 2015
Messages
30
Reason
DX FIBRO
Diagnosis
10/2015
Country
US
State
TX
I got one a few weeks ago and had no reaction
 

Loftpat

Senior member
Joined
Aug 12, 2013
Messages
374
Reason
DX FIBRO
Diagnosis
08/2013
Country
US
State
ME
I have been trying to help myself with diet to. There's some good items that have helped like Costco makes a frozen dish. It's citrus quinoa and kale. It's really tasty and just needs to be microwaved for 3 1/2 minutes. It's pretty inexpensive too.

Quinoa and kale, yum! I put kale in everything where I have it.
 
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