Flare question/ is this similar to what you experience?

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txcola
Regular Member


Date Joined Jul 2013
Total Posts : 194
   Posted 7/14/2016 2:31 PM (GMT -7)   
I have returned to work after being on LTD for four years. I had no choice, my husband's office closed down and either I went back to work or we lost everything. Now that I am working and not home managing symptoms it has been painfully clear that each and every flare is exactly the same, from start to finish, but the duration varies. Since becoming employed, I've had a total of six, and as of this date, I've used all sick time and vacation for the entire year. If I have another lengthy flare, It's very probable that I will lose my job.

This is from my most recent flare- I am currently home because of it as I type this.

May 1st- July 10th. Felt great, rode bike an hour four days a week. Never missed a day due to illness

July 11th- Woke with sore throat and mouth sores, slight fatigue. Eye flare - dry eyes, redness, pain, and blurry vision. Feel like I am getting a sinus infection, or might have strep.
July 12- fatigue much worse, pain in kidneys, frequent urination, feel as if I have bladder infection, breast and rib cage pain.
2:30 a.m. woke to extreme nausea and headache. joint pain and muscle aches pain at least a 8. Stomach cramping and diarrea. Sleep is not possible due to stomach issues and pain
July 13th- Pain continues, stomach issues continue. nausea subsides. Headache is a 10. veins in feet start to hurt, shoes hurt, dressing is not doable because fatigue is so severe. Walking to kitchen from bedroom is difficult. Have hot and cold spells like I am running a fever.
July 14th headache is intermittent, pain in joints and muscles continues unabated, probably about a seven now. stomach woes resolved. Develop a limp due to muscle spasms. Fatigue comes and goes, is better if I just sit. If I try to do anything it wears me out fast.

That's it so far. The symptoms can stick around for days, weeks or sometimes as long as a month. It varies. I am on Savella, turmeric for arthritic pain. I also have cognitive issues that I've been given a very expensive medicine for. I cannot afford it, so I do not take it.

That's it. Input is appreciated. I have had one positive Ana done by a neurologist years ago at a research hospital. Two others done at labcorp were neg. My vitamin d was low, but now normal. I am not anemic and yes, I have failed the inflammatory/autoimmune test, obviously b/c of arthritis.

I guess at this point, I need to be honest and just stay home and manage my disease.. if I can get SSDi that is.

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 427
   Posted 7/15/2016 2:30 AM (GMT -7)   
Txcola-

Sorry to read about your situation, dealing with flares definitely is not fun. The unpredictability itself is enough to drive most people insane, add the pain to it and in your situation stress and it's enough to set most over the edge. With lupus flares do vary in length and symptoms from person to person. I know for me personally summer is worse and I definitely do everything I can to stay out of the heat and sun.

I could not tell from your post, do you have lupus or any positive diagnosis? You mentioned you take Savella which is for nerve pain and turmeric homeopathic form of treating inflammation. If you are suffering in this manner you need much stronger medication I would think, especially if you want to work or even to support a case to file for disability. Are you currently under the care of a rheumatologist?

Hugs,
Melissa

txcola
Regular Member


Date Joined Jul 2013
Total Posts : 194
   Posted 7/16/2016 6:13 PM (GMT -7)   
Melissa,

Yes, I have a rheumy, after years of suffering I have a great one. I have not been diagnoesed with Lupus, years ago, my gynecologist suggested that I had it after reviewing tests she had requested based on an illness I suffered with during my second pregnancy. I ignored her request to find a rheumy, and only now after 15 years, am starting to believe I have something more than fibro and arthritis. I take savella for fibro, and turmeric ( doctor prescribed from compounding pharmacy) for joint pain. The combo works fairly well to resolve pain, but do not stop it or my flares completely. Yes, I am documenting all of this because I believe I will eventually have to go on SSDI, especially after this last flare. It's also become apparent that my co-workers know something is wrong, so hiding it is not working. I have been offically diagnosed with Fibromyalgia- CFS and psoratic arthritis.

I thank you for your response. I am grateful for this forum.

Post Edited (txcola) : 7/16/2016 7:16:19 PM (GMT-6)


cilly
Veteran Member


Date Joined Aug 2014
Total Posts : 1361
   Posted 7/17/2016 11:08 PM (GMT -7)   
You sound like lupus and Fibro to me ,exactly same symptoms as me.
Every day I am in so much fatigue.I cannot work because of all this.

I do not have health insurance that makes me worried a lots.

Having no prescription coverage makes it worse.

I am somehow managing and living a terrible life.
I cannot think too fine and my eyes are always dry.
You should take rest and that s the key in managing it.

Everyday is a challenge for me.

But I am managing my condition and working through it.

I might study or work par time first before I go full time,I don't think I will ever.
It is extremely hard but only we can conquer it.
We support you,all ppl are lovely here.
Welcome friend ,and we support you.
Cilly

txcola
Regular Member


Date Joined Jul 2013
Total Posts : 194
   Posted 7/18/2016 7:02 PM (GMT -7)   
Cilly,

That is so kind. I do hope you are able to get coverage. I tried for years to work through my symptoms, and in the end, I realized I truly needed help. Luckily, I have healthcare. Even so, it's a challenge. It's a high deductible plan and does not cover much. I do however, get a 1500 a year stiped for my entire family of five per year. It's supposed to be used to pay for health care expenses. It's all used by me, Usually within the first six or so months. Then I am basically without health care until the new year begins. I know how difficult your situation must be. Hugs to you.
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