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Chachi
02-23-2011, 04:40 PM
Hi everyone-hope this post finds you all well. I'm hangin' in there. I decided to take a short leave of absence from work. I was finding it way too difficult trying to do both (work and kids-husband works shifts...), and this flare just isn't going away. How do you guys handle flares and work and kids? I feel like my life is on hold right now-but I am happy that I am in a position to be able to take some time off and put myself and my children first. My appt. with rheumy was rescheduled to March 8-horrible having to wait. I saw my NP yesterday-who I think is starting to take me/my illness more seriously. She called me at home last night to ask some questions! That felt good. She had a lovely look up my nose at the appt. and informed me that I have cankers in there-man they hurt. My left eye and my throat have been really bothering me too. Do you think they could be related-perhaps cankers at the back of my throat where I can't see them? Anyone else have this? I also have to go for an ECG/chest x-ray. I've been having chest pain-a heaviness in my chest-that feels a bit better when I sit up/stand up. Still with the joint pain, flu feeling, sore glands, fatigue, night sweats, abdominal pain, hives, crusty eyes in the morning, sinus headaches-sore gumline, IBS-RIDICULOUS......I feel ridiculous when I talk about all of my symptoms. How did you guys handle having to wait for a diagnosis, while feeling sick/flaring.....

Thanks for reading,

Wendy

tgal
02-23-2011, 05:01 PM
Hi Wendy! I am so glad that you were able to take some time off. As we all know stress makes us worse and being over extended is very stressful.

It was hard when I was working because things just seemed to get worse and worse. I had to take a leave after I had a seizure in the office and when I wasn't able to return in July I was terminated. Although it has been very tough financially because I have no income or insurance, when I finally allowed myself to accept that this isn't my fault I began to feel much better emotionally. It is funny because I thought that I would have an immaculate home when I wasn't working but I forgot to account for flares! LOL It is hard to clean on the days I can't get off the couch or out of bed.

As for the sores, I had them in my throat as well as in my nose and mouth. Those things really hurt. Gargling with warm salt water helps but so does getting some of the over the counter sore throat meds that you spray in your mouth. It doesn't fix it but it numbs it until you can get to the doc! I am really glad that your doc seems more interested now. that is a really important thing!

Hope that helps a little. Keep us posted!

Peridot_Gem
02-24-2011, 12:23 PM
Hello Wendy,
We're as well as we can be due to different circumstances mate but thanks for asking.
Well you've had to ease off work, i'm having just a game to keep myself going around the home but it will do you good and a nice rest with your family. Well i've got no kids because of my epilepsey i had to be done so my dream dropped out the window at 29yrs and realization kicked in but i'm just at home with my hubby and dog and the flares make me bad tempered and i'm being straight i'm not coping with none of it very good.

Well i hope your appointment with your rheumo goes to how you want it mate and best of luck on that one, let we know how you get on.

Wendy after what you put at the bottom what symtoms your having otherwise, i get quite a few of those but at the moment i'm struggling along with it and waiting for my plaquenil to still settle in and refering rashes to the skin i'm on a break from steroid creams so it's scratch and bare mate at the mo, alot of the member's do work around it well i'm not one of those but it's like i've stated before it's all down to people's strength and mind.

I've found some info refering canker sore symptoms, as you asked about your mouth etc, hope it helps in some way. Terri xxxx


What Are the Symptoms of Canker Sores?
You may have a canker sore if you have:

A painful sore or sores inside your mouth - on the tongue, soft palate (the back portion of the roof of your mouth), or inside your cheeks
A tingling or burning sensation prior to the appearance of the sores
Sores in your mouth that are round, white, or gray in color, with a red edge or border
In severe canker sore attacks, you may also experience:

Fever
Physical sluggishness
Swollen lymph nodes
How Are Canker Sores Treated?
Pain from a canker sore generally lessens in a few days and the sores usually heal without treatment in about a week or two.

If sores are large, painful, or persistent, your dentist may prescribe an antimicrobial mouth rinse, a corticosteroid ointment, or a prescription or nonprescription solution to reduce the pain and irritation.

Can Canker Sores Be Prevented?
Although there is no cure for canker sores and they often reoccur, you may be able to reduce their frequency by:

1.Avoiding foods that irritate your mouth - including acidic or spicy foods
2.Avoiding irritation from gum chewing
3.Brushing with a soft-bristled brush after meals and flossing daily, which will keep your mouth free of foods that might trigger a sore.
You should call your dentist about canker sores if you have:

Unusually large sores
Sores that are spreading
Sores that last 3 weeks or longer
Intolerable pain despite avoiding trigger foods and taking over-the-counter pain medication
Difficulty drinking enough fluids
A high fever with the appearance of the canker sore(s)

Peridot_Gem
02-24-2011, 12:30 PM
Hi everyone-hope this post finds you all well. I'm hangin' in there. I decided to take a short leave of absence from work. I was finding it way too difficult trying to do both (work and kids-husband works shifts...), and this flare just isn't going away. How do you guys handle flares and work and kids? I feel like my life is on hold right now-but I am happy that I am in a position to be able to take some time off and put myself and my children first. My appt. with rheumy was rescheduled to March 8-horrible having to wait. I saw my NP yesterday-who I think is starting to take me/my illness more seriously. She called me at home last night to ask some questions! That felt good. She had a lovely look up my nose at the appt. and informed me that I have cankers in there-man they hurt. My left eye and my throat have been really bothering me too. Do you think they could be related-perhaps cankers at the back of my throat where I can't see them? Anyone else have this? I also have to go for an ECG/chest x-ray. I've been having chest pain-a heaviness in my chest-that feels a bit better when I sit up/stand up. Still with the joint pain, flu feeling, sore glands, fatigue, night sweats, abdominal pain, hives, crusty eyes in the morning, sinus headaches-sore gumline, IBS-RIDICULOUS......I feel ridiculous when I talk about all of my symptoms. How did you guys handle having to wait for a diagnosis, while feeling sick/flaring.....

Thanks for reading,

WendyAbit more info on Canker sores.

What Causes Canker Sores?
The exact cause of most canker sores is unknown. Stress or tissue injury is thought to be the cause of simple canker sores. Certain foods - including citrus or acidic fruits and vegetables (such as lemons, oranges, pineapples, apples, figs, tomatoes, and strawberries) - can trigger a canker sore or make the problem worse. Sometimes a sharp tooth surface or dental appliance, such as braces or ill-fitting dentures, might also trigger canker sores.

Some cases of complex canker sores are caused by an underlying health condition, such as an impaired immune system; nutritional problems, such as vitamin B-12, zinc, folic acid, or iron deficiency; and gastrointestinal tract disease, such as Celiac disease and Crohn's disease.

Are Cold Sores Another Name for Canker Sores?
No, although cold sores and canker sores are often confused for each other, they are not the same. Cold sores, also called a fever blister or herpes simplex type 1, are groups of painful, fluid-filled blisters. Unlike canker sores, cold sores are caused by a virus and are extremely contagious. Also, cold sores typically appear outside the mouth - usually, under the nose, around the lips, or under the chin while canker sores occur inside the mouth.

Chachi
02-24-2011, 03:48 PM
How awesome are you Terri? Very awesome! Thanks for the information. It is helpful. It sounds like you are feeling down and frustrated. I'm so sorry to hear that and even sorrier that Lupus is interfering with your ability to have children. From what I have read it can be risky sometimes. I had a close call with my second pregnancy-I developed Pre-Eclampsia. Fortunately Gwen was born (only 3 weeks pre-mature) and healthy. I didn't suspect any AI connections at the time, but it took me a long time to recover and get my blood pressure back down to normal. We were very lucky.
What are your flares like? Is there a pattern or are they totally unpredictable? I was able to clean the bathrooms today-haven't had that much oooomph in a while. That was about it though-I needed to eat and rest afterwards. I hope that you have a relaxing evening. I'm reading a book right now by Dawn French-I just love her (loved French and Saunders). You Brits have some of the best comedians!

Take care Terri.
love, Wendy xo

tortugal
02-25-2011, 05:45 AM
Hi Chachi,
I asked this same question when I started hanging around here a month or 2 ago. I don't have a great answer for it still. I am doing my best, but I feel crazy sometimes and feel bad about not being able to work in the office a lot (I am so lucky I can work from home.) I hope you start feeling better soon. My appt. is March 4, I have been waiting since January! It's tough!

I have been getting cankers lately too, so far only one at a time, but they are big and hurt a lot. The joint and muscle pain, fatigue and flu-feeling are the worst for me.

Chachi
02-25-2011, 06:30 AM
Hi Tortugal,
Thanks for the reply. Do you find staying at home and taking it easy/resting helps with your overall symptoms? Some days it doesn't seem to matter how much rest I get, I feel terrible. The last couple of days have been pretty good though. I hate to jinx it but I think this flare might be on its way out......I am afraid to overdo it. I'm excited about getting out of the house today to go for a chest x-ray-woo hoo!
You mentionned feeling crazy- I can relate- and I'd like to reassure you that you are certainly not crazy. What we are going through is very difficult-and not an easy fix. I'm here if you want to talk or vent. My appt. is on March 8th-so you are before me, lucky duck! Let me know how it goes. In the mean time take good care of yourself-your health is the most important thing right now.

Wendy (chachi)

Hi Chachi,
I asked this same question when I started hanging around here a month or 2 ago. I don't have a great answer for it still. I am doing my best, but I feel crazy sometimes and feel bad about not being able to work in the office a lot (I am so lucky I can work from home.) I hope you start feeling better soon. My appt. is March 4, I have been waiting since January! It's tough!

I have been getting cankers lately too, so far only one at a time, but they are big and hurt a lot. The joint and muscle pain, fatigue and flu-feeling are the worst for me.

Peridot_Gem
02-25-2011, 11:19 AM
How awesome are you Terri? Very awesome! Thanks for the information. It is helpful. It sounds like you are feeling down and frustrated. I'm so sorry to hear that and even sorrier that Lupus is interfering with your ability to have children. From what I have read it can be risky sometimes. I had a close call with my second pregnancy-I developed Pre-Eclampsia. Fortunately Gwen was born (only 3 weeks pre-mature) and healthy. I didn't suspect any AI connections at the time, but it took me a long time to recover and get my blood pressure back down to normal. We were very lucky.
What are your flares like? Is there a pattern or are they totally unpredictable? I was able to clean the bathrooms today-haven't had that much oooomph in a while. That was about it though-I needed to eat and rest afterwards. I hope that you have a relaxing evening. I'm reading a book right now by Dawn French-I just love her (loved French and Saunders). You Brits have some of the best comedians!

Take care Terri.
love, Wendy xoHi Wendy,
I looked it up mate for you to give you some idea off a proper site which is to do with our NHS in the uk which i joined.

I'm past being down and flustrated but today as turned out being abit easier and just only having washing to do, as the household chores never end but they've had to be spaced out now got no choice.
Wendy i had no choice where kids was involved when i took ill at 18 they diagnosed me as having schizophrenia because i was depressed and having autissum banged me on steriods loads of pills and besides that grandmal epilepsey hitting me, then they rushed in pulling me of the jabs and all the meds saying they'd over balanced the hormones of my brain and when i was sent to a brain surgeon in 1997 he rain the tests and said you've never been a schizophrenic you've got temporal-lobe epilepsey but they're identical so the doctor's took the easiest way out and caused me to have brain damage to the right side of my brain which does'nt work now and i told the surgeon at 29 i wanted children he said you can't because of the drugs they'd put in my system besides my fits being out of control, if i got pregnant either the child would be damaged healthwise or either one could die during birth so i eventually got steralised when i got with my 2nd hubby but it took some doing getting over it.

I am glad your 2nd pregnancy went ok because pre-eclampsia is really dangerous for moms but i am glad Gwens fine but this lot won't help you now.
For years i had ailments coming at me one after the other and took the lot in my stride, then when my skin went bad and the specialist said i had raynauds, then to the rheumo, it's like the last 3yrs my body as gone down ill quick, i'm worn out easily and when the lupus goes mad it does hurt for several days and the crying i do is so unbelieveable but you mention symptoms in a pattern my mom used to say they was before i knew i had lupus and i took no notice and my hubby now watches all the signs and he swears i go around in a pattern.

There is a few that make me laugh but dawn french ain't one of them.

Well i do hope your days been better mate and mines been abit easier thank goodness, just take it steady Wendy that's all you can do.

Thinking of you terri xxxxxxxx

CanadianGal
02-25-2011, 01:39 PM
Hi Wendy,

Sorry to hear your not so well. I can relate to much of your pain. Chest--mine is the inflammation of the lining around my heart and lungs. Very painful! I have the normal laundry list of lupus symptoms that most of us have, fatigue, fever, joint/muscle pain, canker sores, brain fog, etc... It has also effected my eyes (scleritis). I pray that you don't get this! About the only up side to having scleritis is that it is physically something that people can see (not so pretty though). I don't know how many times people have said "Well you look great" when I feel like crap. They don't really get it if its not happening to them. I know what you mean when you said you feel ridiculous talking about all your symptoms. I know I get sick of listing them all, I can only imagine what healthy people are thinking when I start the long list--it's like a broken record.

I don't have any kids but working was definitely hard. When I left on sick leave and wasn't able to return, like Mari, they terminated my employment. After I worked there almost 20 years with a sparkling clean record and tons of recommendations and accolades.

I sued. It took two years and a tremendous toll on my health and finances, but I won. It was an extremely difficult time that I don't wish on anyone. Right now I'm unemployed (couldn't return to the old employer--they were barbaric in they way they treated me). I did have a long-term disability plan with the old employer but because of the nasty things they said about me (which were total lies) I was denied. Needless to say, I sued. It's still in litigation.

In the meantime, my doctor has just filled out all the CPP benefits for me. So hopefully I start getting some kind of paycheque. It's pretty hard to look for work when you feel like crap and how exactly do you tell an employer that you'll need extra sick days and you won't be able to give any notice as to when you'll need them. Yeah, I think you'll be first on the hiring list--NOT. I really don't see myself being able to go back to work anytime soon. It's a negative loop--you feel bad because your not well enough to work, extra stress piles on because of lack of income, you feel worse because of the extra stress. Like Mari said, "when I finally allowed myself to accept that this isn't my fault I began to feel much better emotionally". That's what we all have to do. Just let it go. (I'm aware that that is much easier said than done at times.)

Interesting what you said about the sore gums. I had a episode last month where I thought I had an abscessed tooth. I went to the dentist. (I had had an abscessed tooth about twelve years ago and it was the same kind of pain.) They couldn't find an abscess but the tooth had died. They did a root canal and I had all the rest of my teeth checked. About two weeks later I had the same pain on the other side of my mouth. By then I thought it might be related to SLE so I didn't go back to the dentist. The pain lasted three days and is now gone and hasn't returned--knock on wood. I started to search the internet for SLE and related dental pain and it seems to be pretty common. Does anyone else experience this?

Anyways, I should stop rambling on here. Hope your feeling better soon and everything goes well with your appts.
Cheers, Donna

tortugal
02-28-2011, 05:51 AM
Hi Tortugal,
Thanks for the reply. Do you find staying at home and taking it easy/resting helps with your overall symptoms? Some days it doesn't seem to matter how much rest I get, I feel terrible. The last couple of days have been pretty good though. I hate to jinx it but I think this flare might be on its way out......I am afraid to overdo it. I'm excited about getting out of the house today to go for a chest x-ray-woo hoo!
You mentionned feeling crazy- I can relate- and I'd like to reassure you that you are certainly not crazy. What we are going through is very difficult-and not an easy fix. I'm here if you want to talk or vent. My appt. is on March 8th-so you are before me, lucky duck! Let me know how it goes. In the mean time take good care of yourself-your health is the most important thing right now.

Wendy (chachi)

Hi Wendy-
You're right- sometimes staying home and resting doesn't do much to make me feel better. Over the past 2 months I have worked from home a LOT, sometimes for weather or car trouble, but mostly because I don't feel good. Usually after 3 or 4 days on the couch I will suck it up and go back to work, but I feel just as bad once I make it back into the office. The first day or 2 of a flare seems to be the worst for me.

Hope you are feeling good today! I spent the weekend taking care of a sick husband, then magically woke up sick myself yesterday. Going to be a long workday for me I fear... I came in to the office and decided to try to fight through since I have been out so much lately.

tgal
02-28-2011, 07:17 AM
Hi Wendy,

Sorry to hear your not so well. I can relate to much of your pain. Chest--mine is the inflammation of the lining around my heart and lungs. Very painful! I have the normal laundry list of lupus symptoms that most of us have, fatigue, fever, joint/muscle pain, canker sores, brain fog, etc... It has also effected my eyes (scleritis). I pray that you don't get this! About the only up side to having scleritis is that it is physically something that people can see (not so pretty though). I don't know how many times people have said "Well you look great" when I feel like crap. They don't really get it if its not happening to them. I know what you mean when you said you feel ridiculous talking about all your symptoms. I know I get sick of listing them all, I can only imagine what healthy people are thinking when I start the long list--it's like a broken record.

I don't have any kids but working was definitely hard. When I left on sick leave and wasn't able to return, like Mari, they terminated my employment. After I worked there almost 20 years with a sparkling clean record and tons of recommendations and accolades.

I sued. It took two years and a tremendous toll on my health and finances, but I won. It was an extremely difficult time that I don't wish on anyone. Right now I'm unemployed (couldn't return to the old employer--they were barbaric in they way they treated me). I did have a long-term disability plan with the old employer but because of the nasty things they said about me (which were total lies) I was denied. Needless to say, I sued. It's still in litigation.

In the meantime, my doctor has just filled out all the CPP benefits for me. So hopefully I start getting some kind of paycheque. It's pretty hard to look for work when you feel like crap and how exactly do you tell an employer that you'll need extra sick days and you won't be able to give any notice as to when you'll need them. Yeah, I think you'll be first on the hiring list--NOT. I really don't see myself being able to go back to work anytime soon. It's a negative loop--you feel bad because your not well enough to work, extra stress piles on because of lack of income, you feel worse because of the extra stress. Like Mari said, "when I finally allowed myself to accept that this isn't my fault I began to feel much better emotionally". That's what we all have to do. Just let it go. (I'm aware that that is much easier said than done at times.)

Interesting what you said about the sore gums. I had a episode last month where I thought I had an abscessed tooth. I went to the dentist. (I had had an abscessed tooth about twelve years ago and it was the same kind of pain.) They couldn't find an abscess but the tooth had died. They did a root canal and I had all the rest of my teeth checked. About two weeks later I had the same pain on the other side of my mouth. By then I thought it might be related to SLE so I didn't go back to the dentist. The pain lasted three days and is now gone and hasn't returned--knock on wood. I started to search the internet for SLE and related dental pain and it seems to be pretty common. Does anyone else experience this?

Anyways, I should stop rambling on here. Hope your feeling better soon and everything goes well with your appts.
Cheers, Donna

Parts of your story could have been written by me! Lost job even though I had never had anything but glowing reviews. Denied long term disability that I had been paying for 8 years. etc. etc. I completely understand what you went through. I will even add that I blame the Lupus being "turned on" because of chemicals that were leaking into the office for several years. Now I am waiting for the SS Andministration to approve my disability which we have been fighting for since early ast year. As much as I hated how it went down and I need money and insurance in order to live, I can't imagine having to work now. There is just no way I could work everyday right now.

OK, off to the doctor for me. Hugs to all of you

Chachi
03-02-2011, 07:23 AM
Hi Donna,

Thanks for the reply and support. It feels so good to hear that someone else understands and can relate i.e. broken symptoms record......Sorry to hear about the job situation. I think it is amazing that you sued-congratulations. I will keep my fingers crossed about the second litigation-assholes! Hopefully that will work out and you won't have to worry about $ so much. So stressful. Perhaps then you could work part-time?
I think that my gum pain might be related to sinus pressure/inflammation. Not sure though.
A week to go before my rheumy appt. Any suggestions? I'm really nervous. I feel like I have so much riding on this appt. I'm due to go back to work the day after the appt. (9th). I'm feeling better these days-probably because I'm not working, less stressed, and can rest when I need to. Also, a lot of the symptoms seem to be going away-so I'm wondering if this flare is finally almost done and I'm going into remission. Who knows. I still have sore joints, and chest pain. Do you bring up any phlegm/cough? How did you get diagnosed with inflammation of lungs/heart?

Hope you are having a good day so far,

w

SandyR
03-02-2011, 07:49 AM
Hi Wendy!

I think you must be a long lost twin sister because you just described all of my symptoms pretty well.
"...I have cankers in there-man they hurt. My left eye and my throat have been really bothering me too...I also have to go for an ECG/chest x-ray. I've been having chest pain-a heaviness in my chest-that feels a bit better when I sit up/stand up. Still with the joint pain, flu feeling, sore glands, fatigue, night sweats, abdominal pain, hives, crusty eyes in the morning, sinus headaches-sore gumline, IBS" All of that could have been written by me and might have been pulled from my thoughts word for word. Just sprinkle in a little Type 2 Diabetes and Sarcoidosis and Psoriasis and auburn hair and we might even look like twins too! I'm sorry to hear that you are going through all this. I would advise that you ask your doctor to also run your ACE levels - to test for Sarcoidosis - because it mimics Lupus and physically looks very very similar.

Chachi
03-02-2011, 04:49 PM
Hi Tortugal,
Hope the day went by fast and you are now at home relaxing. Do you take any medication?

Wendy

Chachi
03-02-2011, 04:55 PM
Hi sandy,

Good to hear from you. I've read a lot of your posts..Do you have an SLE diagnosis? I'm off to google sarcoidosis. Hope all is well.

Wendy

Peridot20_Gem
03-09-2011, 10:02 AM
Hello Wendy,
Hows your health now mate and sorry i've not been intouch for abit. Refering mysef still the same mate but the plaquenil is starting to work but i am dreading next week got to have a caffeter done, two tubes through my cervix and another up my back passage feeding fluid through for the other two to see what's going on, this Lupus and it's symptoms as got alot to answer to ahhhhhhhh. lol

Luv Terri xxx

Chachi
03-09-2011, 04:57 PM
Oh Terri, that doesn't sound like much fun. Why do they have to do this procedure? Glad to hear that the plaquenil is starting to kick in..I had my appt. with rheumy yesterday. He was rushed and not very methodical, I sure hope he knows what the hell he is doing.He sent me for some tests: ESR, CRP, AST, ANA, anti ds DNA, ANCA, B12 folate, iron, ferritin, TIBS, CBC, creatinine, ck, alt and urine. Does that sound about right? Fingers crossed that he can figure this out. He mentionned Lupus and connective tissue disease as well as urticarial vasculitis and pernicious anemia.....Once again it's the waiting game now.

Try not to think about the test you have to have done-I know-easier said than done.

take it easy toots.

wendy
.





Hello Wendy,
Hows your health now mate and sorry i've not been intouch for abit. Refering mysef still the same mate but the plaquenil is starting to work but i am dreading next week got to have a caffeter done, two tubes through my cervix and another up my back passage feeding fluid through for the other two to see what's going on, this Lupus and it's symptoms as got alot to answer to ahhhhhhhh. lol

Luv Terri xxx

Peridot20_Gem
03-09-2011, 05:26 PM
Hi Wendy,
They're doing that procedure due to me losing loads of blood and when niot losing the blood i have small amounts of urine pass at times and it can be different things but it can also be the cause of to much protein in the urine from Lupus but god knows where the results will be going until i ask at the hospital.
Wendy i don't know about your Rheumo specialist mate but i don't rate mine, just took a quick look at my background and like yourself 12 bloods took in the names you've mentioned but some i don't understand, i just like to see it in black and white what i have and it was when he sent a couple of letters to my GP who let me have a copy.
Pernicious anemia is megolablastic anemia which i have, they gave me zinc tablets and they was'nt enough so i'm having B12 Jabs now for life every 3mths, it makes you lifeless.
If your ANA comes in high then you most likely have Lupus in your system, my ANA & ENA came in high and the rheumo would'nt say if i had it or the doctor in the day unit but i've got a great dermo specialist for my raynauds and he told me i had it but when i see them in august they want to do a DNA test on me, god knows what else they want to confirm me with.

Thanks for support coming next week mate & rest yourself also.

Terri xxx

Peridot20_Gem
03-11-2011, 09:25 AM
Hi Wendy,

I hope your not suffering to much today mate and if your like me feel ready for the knackers yard [excuse the expression].
The quicker you get your results you'll know better with what your dealing with.

Love Terri xxx