Author Topic: Flare like I've never known.  (Read 1008 times)

loulou

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Flare like I've never known.
« on: June 21, 2021, 09:05:12 AM »
Hi everyone,

I haven't messaged in a while, things was going ok. I am not sure what happened but I have hit a flare that has really knocked me down, physically and emotionally.

I have a big family and yet I am unable to tell them honestly how I'm feeling. I have always jumped back up and managed to crack on with it. This time is different. Fatigue, pain and nausea, with a sense of weakness in legs and slightly off balance. Been off work for nearly 3 weeks. It's a temporary position and was due an interview Wednesday for permanent work.  I hate these auto immune disorders, they just get you out the blue.

I've ranted a bit here, when it should be about the positive things in life, especially the way things are with this darn virus.

Hope you are all doing ok..

X Loulou
primary sjogrens, primary biliary cholangitis, auto-immune hypothyroidism, Osteoporosis gerd.hiatus Hernia, cold feet, no tears, lacrilube, celluvisc, thyroxine, ursofalk, gabapentin, omerprazole.

MarieB

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Re: Flare like I've never known.
« Reply #1 on: June 21, 2021, 10:23:39 AM »
So sorry loulou,
I'm learning too that people around me just don't understand.  They think I should get out in the sun or wake up, shower and go shopping.  Even those who have looked up Sjogrens still do this to me.  They don't understand or believe me really.
But I do. So sending you hugs and hope.  Please let us know how it's going. 
Marie
Diagnosed w/Sjogrens May2014
SSA >8  SSB >8 (0.0-0.9AI)H
Antichromatin Antibodies >8 (0.0-0.9AI)H
Anti-DNA(SS)IgG,Ab/Qn 37(0-19EU)H
Began Plaquenil May 2014

Carolina

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Re: Flare like I've never known.
« Reply #2 on: June 21, 2021, 08:02:46 PM »
Heavens, loulou, if you can't rant here, where can you rant??   This forum is for support: information, humor, ranting, feeling sorry for my self!

I have had some awful flares in my time.   One thing that will usually stop a flare in its tracks is a Prednisone taper pack.  Would your doctor prescribe this for you?

A flare that lasts three weeks is super awful and you deserve to rant all you want!

Keep us posted.

I've given up on getting support from:family, friends, most doctors.....I get support only from those who walk the walk of an immune system that sabotages our bodies in endless ways.

I am 79 and my Immune Disorder(s) have destroyed my moisture system, my bladder, the nerves in my legs and skin, damaged my gastrointestinal system and  my lungs.  I also am deficient in the antibody IgG and have to have a 4 hour infusion every 4 weeks.

I am severely disabled, wear legs braces and walk with a walker..   All from my immune disorder.

Rant away, loulou.  We are here to hear you.  And send you love and caring.

Elaine
Female-Elaine,79-CVID-pSJS-WMD (Eylea) Inter.
Cys-PN-CAD-Osteoarth-SFN-Oral Lichen Planus-SIBO-Act.Purpura-Tinitus-Meniere's-Hearing Loss-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamx-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Om.3-Methotrexate-Esome

meirish

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Re: Flare like I've never known.
« Reply #3 on: June 21, 2021, 10:11:11 PM »
Sorry to hear that you are suffering so much and for so long. Im with Caroline, time to see the doc and find out if a prednisone pack or taper dose is in order. It will save your life for sure. There is no reason to not find out if this is possible and it is for a short period of time and will give you and your body the relief you need.

The other thing is...there may be something other than sjogrens that is picking away at you and is causing the flare in the sjogrens. We sometimes forget that there are other health issues that can strike us down. Please don't put up with it any longer and if your relatives give you trouble remind them that unless they walk in your shoes they will never understand just how miserable you are from the autoimmune diseases.

I think we all have too live thru our illnesses with our relatives sort of giving us a look at times. It is so hard to believe that we can look so darn healthy and feel so dang sick. I try to explain to them that it like having a case of the flu and having it every day or to some degree every day. Like try having nausea or morning sickness in some shape or form a good many days of ones life. Or the aches and pains/ chills, etc.

I always tell people that in all my years with this stuff I got more work done sick than most people got done healthy. Sort of a smarty remark but pretty much true I believe. Pursue feeling better so you can push ahead on the job. Good luck and keep us updated if you feel like it. meirish

Kathy57

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Re: Flare like I've never known.
« Reply #4 on: June 21, 2021, 11:11:52 PM »
Lou Lou,

So sorry that you are having such a bad time.  We have all been there and sadly will likely face it again.  Of course you can complain here and I think it can be very therapeutic!  It took me a long time to realize that I look normal because I felt so bad that I thought people could actually see it.  Of course, they did not or could not. 

I finally joined a local Sjogrens group and we met for lunch.  All of these ladies looked so good and ?normal? but I was floored to learn that most of them had two or three autoimmune diseases,  and not just Sjogrens.  That?s when it actually hit me as to why people looked at me like I was crazy when I told them I felt so bad.

I hope you can get something to help you quick.  My husband is undergoing cancer treatments and also suffers from fatigue.  We are quite the pair with our fatigue!  We are both retired and we get naps in when we need them.  We rest when we can or need to which for me, feels like every day.

What many people don?t get is that Sjogrens is a really ugly and miserable disease!  Please feel free to complain as much as you need to!  We get it!

Wishing you better days ahead,

Kathy
62 yr old female - Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer, Osteoporosis.

loulou

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Re: Flare like I've never known.
« Reply #5 on: June 22, 2021, 10:38:43 AM »
Thank you for your responses.

 I wish we didn't have to validate being sick. I have emailed the Reumatologist and hope to get an apt soon. My GP just go routine bloods and dont know what is going on. I do have other autoimmune disorders, pbc hypothyroidism fibromyalgia. But this does feel so different, perhaps it is a very nasty flare.

I will discuss presidone with Rhuemy.

Thank you so much for this much needed site with fellow sufferers that empathise and know exactly how it feels and going through so much in different ways.

Wish you all the best.

X Lookout
primary sjogrens, primary biliary cholangitis, auto-immune hypothyroidism, Osteoporosis gerd.hiatus Hernia, cold feet, no tears, lacrilube, celluvisc, thyroxine, ursofalk, gabapentin, omerprazole.

loulou

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Re: Flare like I've never known.
« Reply #6 on: September 23, 2021, 10:32:53 AM »
Hi,

Just wanted to update.

The Rheumy said that she believes what I've been suffering is a flare of Fibromalgia. She has increased the Gabapentin.

I have also had a scan on the hip/upper thigh area and it showed stretched tendon issues, I declined the steroid shot and agreed with Rheumy to have Physio instead to see if it helps.

Mornings I feel so grotty, nausea pain etc. It such an effort to get moving sometimes.

But thoughts are with you all.

Take care,

Loulou

primary sjogrens, primary biliary cholangitis, auto-immune hypothyroidism, Osteoporosis gerd.hiatus Hernia, cold feet, no tears, lacrilube, celluvisc, thyroxine, ursofalk, gabapentin, omerprazole.