It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Arthritis Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 01-28-2013, 07:24 PM   #1
Newbie
(female)
 
Join Date: Jan 2013
Location: Arkansas, USA
Posts: 2
Tennis mom HB User
Diagnostic frustration

Hello all, newbie here!

I have had weird symptoms much of my adult life, tingling, dizziness, carpal tunnel like symptoms, costochondritis multiple times, IBS, bladder issues (urgency, spasms, burning upon urination), muscle weakness, burning pain, muscle twitches, low grade fevers, severe loss of appetite, flashes in my eyes, joint pain, and recently dry eyes, mouth, and skin. I have had periods of relative health and periods of severe disability.

All of my bloodwork is negative/normal (MRI with contrast, ANA panel, RF, SSA, SSB, CRP, ESR, and tons of other anti-body tests like scleroderma, myasthenia gravis, etc.).

My rheumy diagnosed me tentatively with Sjogrens based only on symptoms. I wasn't taking any drugs that could have caused my dryness. He told me a lip biopsy was not needed. He thinks I might also have RA but no tests confirm it.

I have been on Plaquenil and prednisone for a year, which wasn't really helping so we added methotrexate. He stopped that due to my hair loss this week. Now I am on arava and having a big flare of joint pain. My hands are red and knuckles are swollen. Every joint hurts except my hips. I am having no other symptoms though just the joint pain.

I am getting depressed because I have been trying for a whole year to get something that works. I feel like I am no good to anybody, my family, my friends, just a worthless, useless sick person. So frustrating!

 
Reply With Quote
Sponsors Lightbulb
   
Old 01-29-2013, 11:53 AM   #2
Senior Member
(female)
 
Join Date: Oct 2012
Posts: 104
margarita889 HB Usermargarita889 HB Usermargarita889 HB Usermargarita889 HB Usermargarita889 HB Usermargarita889 HB User
Smile Re: Diagnostic frustration

Quote:
Originally Posted by Tennis mom View Post
Hello all, newbie here!

I have had weird symptoms much of my adult life, tingling, dizziness, carpal tunnel like symptoms, costochondritis multiple times, IBS, bladder issues (urgency, spasms, burning upon urination), muscle weakness, burning pain, muscle twitches, low grade fevers, severe loss of appetite, flashes in my eyes, joint pain, and recently dry eyes, mouth, and skin. I have had periods of relative health and periods of severe disability.

All of my bloodwork is negative/normal (MRI with contrast, ANA panel, RF, SSA, SSB, CRP, ESR, and tons of other anti-body tests like scleroderma, myasthenia gravis, etc.).

My rheumy diagnosed me tentatively with Sjogrens based only on symptoms. I wasn't taking any drugs that could have caused my dryness. He told me a lip biopsy was not needed. He thinks I might also have RA but no tests confirm it.

I have been on Plaquenil and prednisone for a year, which wasn't really helping so we added methotrexate. He stopped that due to my hair loss this week. Now I am on arava and having a big flare of joint pain. My hands are red and knuckles are swollen. Every joint hurts except my hips. I am having no other symptoms though just the joint pain.

I am getting depressed because I have been trying for a whole year to get something that works. I feel like I am no good to anybody, my family, my friends, just a worthless, useless sick person. So frustrating!
Hey there,
I understand what you are going through. When I started with arthritis (inflammatory and osteo as well as fibro) I thought I would have to quit teaching because I was ready to throw up from the pain by the end of the day. I bought correlle instead of the stoneware I loved because I couldn't lift the plates. I was a head to toe aching mess. It took time, but we found medications that worked and I have been largely pain-free since. Now over 20 years later my joints are finally causing pain so I have had 2 PKRs and a thumb surgery. I feel blessed because I have been fixable.

Hang on to hope-I have found that almost half the anti-inflammatories I tried didn't work well or work long for me. So I tried something else again and again until I was successful. I noticed that you tried plaquinal(I have been on it for over 20 years with success). One other thing that I am on that is not as common is minocycline. There was research that tetracycline and some related medicines help with inflammatory arthritis. You might ask your rheumatologist about trying it. I have had good luck with fish oil for adding to the anti-inflammatory effect and have used organic coconut oil on my skin. It seems to help when nothing else does. All of us who live with arthritis have found some things that help. If this title doesn't draw enough replies, try asking for ideas in another way. Keep looking for answers and keep trying. And remember that a hopeful attitude is important to your pain level-if you let yourself fall into self-pity your pain will increase. Talk to your doctor about your emotions as well as your pain.

Hang in there-this is a long journey, but it will get better. You have many other options of medication to try until you find the one made for your own special chemistry.

Good healing

Margarita

 
Reply With Quote
Reply Reply




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added




Top 10 Drugs Discussed on this Board.
(Go to DrugTalk.com for complete list)
Bextra
Celebrex
Enbrel
Humira Ibuprofen
  Methotrexate
Mobic
Prednisone
Tylenol
Vioxx




TOP THANKED CONTRIBUTORS



jennybyc (108), Haydena (90), Moldova (47), margarita889 (23), d j (21), Janet20 (16), ladybud (13), Greengal04 (10), dajo (10), gingertea (8)

Site Wide Totals

teteri66 (1165), MSJayhawk (1000), Apollo123 (898), Titchou (833), janewhite1 (823), Gabriel (758), ladybud (747), sammy64 (668), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 09:16 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!