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Debbie Downer
Regular Member


Date Joined May 2009
Total Posts : 62
   Posted 6/8/2009 4:28 AM (GMT -7)   
I was just curious what a typical flare was like for others? Does anyone get a sore throat with the mouth sores?

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/9/2009 9:20 AM (GMT -7)   
Debbie,

A flare for me means that the symptoms I typically have all the time -- joint pain, fatigue, muscle aches -- all get worse. Sometimes my symptoms are just a little bit worse and other times they put me to bed. I don't get sore throats but I do get little blisters/sores in my mouth.

I'm curious as well about what others call a flare.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/9/2009 9:33 AM (GMT -7)   

Brain fog (worse than usual) is usually the first sign for me that I'm heading in a flare.  Fatigue with all over pain and sometimes joint pain can be bad.  I can't focus on much, usually dizzy, irritable, and just want to sleep most of the time.  The medication does help though because although I still get flares, they are much quicker to get over (as long as I listen to my body).

I get mouth sores all the time but thats because I take Methotrexate.  I do take folic acid but I still get these everytime.  I take my MTX on Friday and the sores are usually cleared up by Monday or Tuesday so not too bad.

edited to add:  I don't get sore throats but every once in a while get that "lump" in the back of my throat.



Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009
 
Meds: Plaquenil 400mg/day, Pred 2.5 mg/day (tapering), Methotrexate 10mg/week, Hydrocodone PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid


Debbie Downer
Regular Member


Date Joined May 2009
Total Posts : 62
   Posted 6/9/2009 12:37 PM (GMT -7)   
That is exactly what I mean by sore throat. It is like I have a lump that I can't swallow. It's more annoying than painful and it doesn't always occur.

For me lately, I have "flares" twice a month (I hesitate to call it a flare because I do not have a dx yet). It's terrible. I don't know what I'm doing wrong. I know it's coming when I wake up in the morning and I have the feeling of being hungover but without the drinking. I feel like I haven't even slept. I am very irritable. The fatigue usually gets worse over the next few days peaking about day 3. And, all the other symptoms are worse as well. Increased joint pain, weakness, body aches, oh and always always as sure as anything I get mouth sores on day 2. I HATE HATE HATE them so much. They hurt horribly bad. I usually have them on both sides of my tongue, under my tongue, behind my lower lip and sometimes on the sides of my cheeks. It makes the whole experience triple as bad because I can hardly eat. I just feel like brushing my hair is comparable to running a marathon. I get worn out fast. I can't keep up with the house or my children. I get very grouchy. I find myself snapping at my husband a lot. Oh, and absolutely NO interest in anything sexual. It usually last about 5 days. I am actually getting over one now and I feel a lot better today, but not good by any means. It's sad when the way I feel right now, I consider a good health day. I miss the way I used to be and some days I have a hard time not breaking down and crying. I just feel like I'm never going to feel good again ever. I love my children, but I don't think I would of had children if I had known this is what would become of me. Is that selfish? I knew I would have a "flare" after I got back from Jamaica. I just knew it. It's why I wasn't as excited to go. That's depressing. 4 days without my kids in a tropical resort and I kept thinking about how I was so going to regret this in a week.

I went to the dentist today because I have a tooth that is very decayed in the back of my mouth and I've been putting it off. I actually got excited because I thought maybe it was the cause of all my health issues. Of course, it isn't. The dentist told me he thinks the mouth sores which I still have by the way even though I feel better, are auto immune caused and that this tooth would not be making me sick. It crushed me. I really wanted it to be that and be that easily fixed. Something tells me I will be living with this forever. Anyway, welcome to my big pity party. Anyone bring any chocolate cake?

anna24
Regular Member


Date Joined May 2009
Total Posts : 27
   Posted 6/9/2009 1:18 PM (GMT -7)   
I have that lump in my throat nearly all the time. Has a doctor ever told you that it is caused
by methotrexate? I had an ear/nose/throat doctor diagnose it as "LPR" which is stomach
acid coming into the throat causing irritation. Apparently different than acid reflux. I would be
interested to know if methotrexate can cause that.

Regarding flares, like you Patty, all the same symptoms, just worse. Which means more Motrin!

Anna

Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 184
   Posted 6/9/2009 4:31 PM (GMT -7)   
My flare is joint swelling and my fingers draw down... my knees.. usually get terrible in the evenings... at night is when I fall apart.... and my eyes get puffy and sting.. the lids swell... I haven't had that terrible eye infection in a good while....I don't want it...

dnvrangel
New Member


Date Joined Jun 2009
Total Posts : 1
   Posted 6/11/2009 10:39 AM (GMT -7)   

Hello to everyone.

Newbie -- just joined.  I have been reading thru this forum and today is the first day I actually just wanted to write something to anyone because I am at the end of my mental rope, so to speak.

I work full time - testing software -- and took in a homeless, drug/alcohol brother and his dog.  I have lived alone most of my life and had this set up as my serenity --- especially during flares.   I don't have that serenity anymore...which is fine because family does come first.

I am having a very bad day -- foggy head, no energy, aching from muscles and joints, swelling, headache, and just want to sleep so badly but there is a dog that I needs to be taken out.  I live in an apartment -- and it does get me out and about, but this week each day is worse.   I feel like I am failing at everything and that there is just tooooo much physically that my heart just goes down to this place.  I don't know if this is relateable or even the right place, but I cannot stop scratching the rashes on my arms, the pain in my hands and shoulder almost make me cry (but i refuse to do that) and I cannot focus or concentrate long enough to even stay on target with my work.   Today -- I wish I had not taken on all my family financial and home issues and that I was here alone where I could just let the serenity that once existed here calm me.

Thank you for your time -- and you all need to know that you are inspirational to me -- thank you for sharing YOU with this forum.

me

 

 

 

 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/11/2009 12:46 PM (GMT -7)   
Dnvrangel,

I'm so glad you posted here and urge you to start your own thread so everyone can get to know you. Have you been dx'd? How long have you had an AI disease?

I understand the kind of bad day you're having and you've come to the right place to vent and seek support. I also understand your situation about your brother. My stepson and his (not housebroken) dog are staying with us while he deals with his drug and alcohol plus problems with severe depression. He was in the hospital because of the threat of suicide and we brought him home when he was released. Now he says he's not ready to go back to work, or to his apartment, and his complaining are such a drag on my energy. I love his dog but his bathroom manners are about to drive me crazy. And I'm watching my 8 & 10 year old granddaughters while their mom works, and I MISS my serenity! Wow - I needed to vent too, I guess. What I'm saying, is that I really really relate to you. I guess your brother has no other family member that can take him in for a while?

Sometimes being sick can be overwhelming, and then when life steps in and gives us added responsibilities it's hard to handle. Lucky for me, I know that my stepson will be moving out next week because we've given him a deadline. And we won't be supporting him any more either. And the grandkids will be back in school in the fall. But it sounds like you don't have an end in sight. I hope you can find ways to get some rest.

I'm sending you a cup of Rosie's hot tea and gentle hugs.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


LovedbyHim
Regular Member


Date Joined Mar 2009
Total Posts : 98
   Posted 6/12/2009 4:09 AM (GMT -7)   
I got a raspy voice, mouth sores, and sour stomach all at once. Hope this helps. Tammy

I have SLE, Raynauds, mitrol valve prolapse,Haushimotos thyroiditis.
 
Meds I'm on are Prednisone, Vitamin D, Hydroxchloiquin, amitriptylin, levoxyl, colchcine, mobic, flexeril, and lyrica
 
Rom 8:18-19 "I consider that my present sufferings are not worth comparing with the glory that will be revealed in us." 


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1548
   Posted 6/12/2009 6:46 AM (GMT -7)   
Like Pat I always feel badly, but certain symptoms become worse and sometimes horrible. So here goes: It starts with fatigue that sleep doesn't help, followed by a strong, diffuse pain at the back of my neck. Next I become so weak that I am SOB from walking up the stairs to my bedroom. Then the pain spreads over my body. Often elbows, shoulders & feet hurt. My tremmors, balance, clonic jerky movements & stuttering worsen. Brain fog makes concentration very difficult. I get sores on my tongue. When sjogrens is bad my mouth, nose & skin dry to the point of spliting. I get keloid sores at the corners of my mouth. My vagina is dry in a league of its' own. My mental health is maintained with prozac, wellbutrin, seroquel & ambien.   Oh, a side note: I always take my meds. I spent two days in a mental health facility for attempting suicide during my undiagnosed phase. The facility sucked big time so I learned my lesson.
I have prescription drugs I use as needed for mouth sores, keloid sores, splitting skin. Over the counter for dry mouth I use Oral Balance, Biotene toothpaste, mouthwash without alcohol. For dry skin I use Eucerin cream. Systene for my eyes. I've been flaring lots lately (like now), but it only lasts 2 days. Depression and Sjogrens is on going. If you've read this far you should get a commendation. As always to all my lupus sisters, I send lots of love. Butterflake
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, IBS, stage 1 kidney disease  Rx: Cellcept, plaquenil, prednisone, celebrex, lisionpril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin, xanax, ambien, neurontin, tylenol arthritis, flexeril, nasonex, phenegren, vitamins, Acupuncture.  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 
 


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 6/13/2009 5:35 PM (GMT -7)   
Hi Debbie,

My name is Melissa, I haven't posted here in awhile due to my own flare being so bad I had to take a bit of a break from the computer in general. Like most others a flare for me typically begins with extreme fatigue that no amount of sleep can address, my body simply feels as though I haven't slept in weeks. Then my joints become terribly sore and swollen, normally my hands, wrists, elbows, shoulders, hips, knees and feet are affected. At times I also get horrible pain in my right side, doctors say it's inflammation in the lining of the ribs, what ever it is it hurts like heck. Brain fog is another issue, when I am in a really bad flare. There are times when I will run into someone while grocery shopping or something and I know I know them but can't pull their name out, it's so embarassing!

I am currently in the midst of another flare, this time not only have my joints swollen, but so has most of my body! My face is so swollen at the moment I'm nearly unrecognizable to those who don't live with me day to day. Not only can I not wear any of my beautiful rings, but now my watch is even too small! I've never had swelling quite to this degree. And mouth sores, OMG, do I ever have these! To top it off my tongue is covered in little red dots and hurts like heck so I don't want to eat anything but pudding or ice cream.

I often have a sore throat, but I believe it is caused by some of my medication, as I have it too often. If I talk to much my voice becomes raspy or I will loose it all together, my rheumy says there is actually a joint in the larnx that becomes inflammed just like my outter joints and that's what causes this.

Hugs to you;
Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis

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