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Flare?


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#1 ozzy69

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Posted 16 February 2009 - 04:27 AM

About three weeks ago I got sick with sore throat and flu feeling. I get these symptoms every 6 to eight weeks and have considered them a flare of Sclero. I went to my primary doctor anyway because we lost power for a week (Ice storm) and I did not want it to get worse. He put me on a Z pack. The Z pack did not do much so my flare is just running its course like it always does. My throat gets really red and sore and this time my ears are bothering me. It feels like they are stuffy and sometimes a ringing noise is being heard. Has anyone had problems with their ears?

Does anyone else have hot flashes? This winter has been a killer for me. If I get cold my hands, feet, and knee suffer from raynalds bad. Like that is not bad enough, but if I wear too much clothes or turn up the heat, then I get these hot flashes that make me sick. My husband sees my hands and is always telling me to get warm. Then he freaks out when he see me really sweating, pale, and purple hands. I would rather be cold at least it is numb. When I get hot, I got lightheaded fingers swell/red and it makes me sick to my stomach. It is hard to explain and sounds crazy. Does anyone know what I am talking about and how do they handle it? At night I also get hot flashes and the next I get chills..It wakes me up.

Thanks,
Nina Lynn

#2 JANQ

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Posted 16 February 2009 - 05:48 AM

Hi Nina:

It sounds so miserable; I am very sorry for what you are going through.

My flares began about 6 years ago, but I didn't know at that time what was going on with me. It seems like just the same symptoms, very sore and red throat, flu-like symptoms, and most of the time I was put on antibiotics, which never helped.

My ears were also affected like yours with the stuffiness, but now the problems have changed. I have a noticed a hearing loss, very much so in fact. I was having a constant high-pitched ringing, which has now changed to a constant low-pitched ringing, or maybe a better description might be a constant loud "white noise" sound. Have you noticed a hearing loss, also?

I hope this helps you somewhat. At least you know that you are not alone in your experiences.

Warmest wishes,

Janet

#3 barefut

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Posted 16 February 2009 - 07:36 AM

Hi Ozzy ~

Count me in too. I guess you can call them hot flashes but I hate to think they are menopause related - I think I am not quite that age yet <_< .

Anyway, with me my face will feel burning up but the rest of me will have the chills and then the cold sweats. I will feel feverish but have no fever. It's such an icky feeling. Add the nausea and dizziness and then I just want to crawl under the covers until it goes away.

I have that 6 - 8 week 'flare' cycle too! Sometimes they can catch me by surprise and overnight I will go from 'normal' functioning to actually needing a cane to get out of bed.

About the ears: I have that clogged/stuffy feeling all the time and a constant ringing which sometimes goes really high pitched and I will have temporary (a few minutes) of hearing loss in one ear or the other. About 3-4 times a year I will wake up with vertigo - Wheeeeeee!

So yes, I know what you are talking about and how do I handle it? I come here and complain - looking for sympathy and understanding and then I at least feel better for a little while. I haven't found anything medicinally to help or prevent these icky episodes.

Hang in there, and know that you are not alone.

#4 Buttons

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Posted 16 February 2009 - 08:16 AM

Hi Nina, sorry to hear your having such a miserable time of it. Just wanted to say that like you and lots of others I get the awful Raynaud's attacks and cannot cope with the cold but then the opposite happens to me and my hands/feet begin to swell, go bright red and burn something awful! My rheumatologist diagnosed me has having the opposite of Raynaud's as well which is erythromelalgia (EM). I do find it hard to feel just right in terms of my body temperature, being icy cold one minute and then going boiling hot! I just wear thin layers so that I can add a layer easily or remove one but its not easy. My hubby says my internal 'thermostat' is broken!

Hope you find some answers soon to ease your problems.

Jensue

#5 ozzy69

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Posted 16 February 2009 - 09:06 AM

Thanks for your replies... :)

Barefut,

I do not think the hot flashes are menopause related either. I am 39 but I also have been on hormones since I was 24. I changed to compound hormones about two ago, and they are great. I do not have any other issues related to menopause . I guess we do have some kind of flares.. Thanks so much for your kind words.

Jensue,

That is funny about what your husband says. I tell my husband all the time that mine is broken..I think I do have erythromelalgia also. I have a doctor appointment on 2/24/09 and will ask her about it. I also wear layers that I can take off. I prefer the cold hands & feet to the hot hands & feet. It seems so crazy...

Janet,

I have not noticed any hearing loss.I have selected hearing anyways as my teen boys say. :lol: It is weird. It feels like what it would feel if there were hair growing in my ears.

Thanks everyone
Hugs,
Nina Lynn

#6 Amanda Thorpe

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Posted 16 February 2009 - 10:23 AM

Ah yes the winning combo of Raynaud's and erythromelalgia (EM), can't beat it. Although my Raynaud's is more frequent the EM is more severe. For nearly a week I have had EM flare up at night, I wake up with burning legs, feet and hands so I put cold lotion on and have my feet out of the covers. Now bear in mind its winter, I am in the coldest room with no heating through the night and yet the EM is so bad I can do nothing but expose the feet to the elements and hope for the best!

I have tinnitus and have done since I was a child so ringing ears is familiar for me so much so I don't think I could cope with real silence.

I don't know about flare but do know about feeling good one minute and feeling awful the next. Even today I felt good so started a task and after an hour felt awful. It's the unpredictability that makes thing so difficult to manage that and the conflicting illnesses that will insist upon cohabiting our bodies.

Well I think we can safely say none of will ever be abducted by aliens (no I don't really believe in them) as they'd take one look at our bizarre bodies and phone home, collect.

Amanda
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#7 Buttons

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Posted 16 February 2009 - 10:35 PM

Amanda

I've found also that my EM is much worse at night, the burning sensation, redness & swelling has been bad recently. We just can't win between the Raynaud's & EM!

Jensue

#8 razz

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Posted 17 February 2009 - 08:40 AM

Hi Nina Lynn,

Sorry to hear you've had flu-like symptoms and other possible sclero-related ailments. I also had hot flashes a while back that were not menopausal-related, but very similar. The hot flashes would come on suddenly that I would check the thermostat in the house to see if it was the furnace running too long. Then the hot flashes would stop just as quickly as they started. This went on over a period of a few years. I'm not sure what caused them, possibly a hormonal imbalance since I'm not on hormones. (I plan on seeing an endocronologist to see if taking hormones will help me with weight gain and sleep deprivation.) I see balancing hot flashes with Raynaud's can be tricky. I hope you find the right combination of cooling off and warming up.

As far as hearing problems, I had what felt like fluid in one of my ears, but no ringing. I later found out it was caused from the toothache I had been experiencing which led to an ear infection. A day with the dentist and a session of antibiotics took care of that problem. Hopefully at your appointment your doctor can check your ears for anything unusual.

I hope all is well with you. Take care. :)

Hugs,
Razz
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#9 smac0719

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Posted 17 February 2009 - 02:01 PM

This is a very interesting thread. Since holiday, I have had recurring sinus infections and flu-like symptoms. The main symptom has been a sore scratchy throat and the feeling like I'm coming down with something. I thought my immune system had weakened since my Sclero specialist increased my methotrexate in December. I have been on 2 different antibiotics and neither helped. Just when I think I'm feeling better the throat starts to bother me again.

I have not had ringing in my ears, but have had what feels like pressure and clogging.
I may have Scleroderma, but Scleroderma doesn't have me!

#10 smac0719

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Posted 17 February 2009 - 02:06 PM

Nina,

My finger got "click happy" and I didn't get to add that I'm sorry you are having so much trouble and I hope you get some relief soon.

I have also been experiencing hot flashes and thought I might be premenopausal. I just asked my primary to run some blood tests to check it out. I go to bed cold and wake up hot. Sometimes I'm sweating even though I don't feel hot!
I may have Scleroderma, but Scleroderma doesn't have me!

#11 Amanda Thorpe

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Posted 18 February 2009 - 02:26 AM

Hello All

I have periods of getting overheated and sweating...yuck! It started again yesterday and all I was doing was washing my hair! In the end I de-clothed and sat in a towel waiting for it to pass. This comes and goes and I'd like to point out it's still winter at the moment.

I am 40 years old and I am not aware of anyone in the family having early menopause so I don't think it's that.

Oh well probably another weird sclero thing!

Amanda
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#12 ozzy69

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Posted 18 February 2009 - 02:58 AM

Thank you for all your kind words...

I guess these are normal corks of Sclero..I try not to let it get to me, but sometimes you just want answers. That is so hard to get with this disease because everyone different. At least I know I am not the only one out there that feels like this.

Razz,

You’re so right about: balancing hot flashes with Raynaud's can be tricky. It seems crazy at times.

I hope the endocrinologist can help. Please keep us updated. Not sleeping can be really hard. I was up at 3:00 am and could not go back to sleep. Now I am at work thinking it is going to be a long day.. LOL

Big Hugs Everyone,
Nina Lynn

#13 TJ903

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Posted 18 February 2009 - 09:42 AM

So sorry to hear all of this. I too have alternating cold and stream sweating. I have to change my clothes, sheets and my hubby's. Just joking here, but he's made comments about the amount of sweat. On the other side, when you get a chill and you have extensive skin issues, does it feel like needles are being stuck in you but from the inside out?

I having blood work to confirm a diagnosis of polymyositis. Oh, just what I needed. That will probably explain that issue. My skin is so hard and looks like and feels like orange skins. I'm losing hope. The more rigid my body becomes, the more imprisoned I feel. The view outside of my window is my world now. I keep hoping that the next time I awake, it'll all be just a dream.

I'm on disability and we got word today that my husband is losing his job. Sometimes it just doesn't pay to be positive and hopeful when nothing is in your control.

Sorry, got off-track. Thanks for the virtual shoulders!

Soft, warm, chilly, absorbent hugs coming your way,

TJ

#14 Amanda Thorpe

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Posted 18 February 2009 - 12:26 PM

Hello TJ

I am sorry your husband's lost his job, that's hard anytime particularly in this climate.

I'm on benefits and pension from early retirement, I went from working 5 days a week at a 20 year career to sitting on my duff 5 days a week and I'm only 40! Being housebound is hard to bear, not even being able to pop to the corner shop a minute away. The analogy of being imprisoned is a good one.

How intersting that you should say about waking up and it all having been a dream. Today I was evaluating why I had not become more involved in something local to so with sclero and I realised it was because I assumed I would wake up one day and it would be gone, that I wasn't really a fully fledged sclerodermian. Well I am getting more involved now because I am a fully fledged sclerodermian and will be forever and ever!

Although tomorrow you will still have sclero other things may be different and if not tomorrow the day after or the day after that. It DOES get better because even if the disease does not or our circumstances do not improve we do, the best in us comes roaring to the fore because sclerodermians are resiliant and determined even if we don't feel it.

I do hope things improve for you quickly and meantime vent here so you don't have to carry it on your own.

Take care. :)

Amanda
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#15 Snowbird

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Posted 18 February 2009 - 01:10 PM

Hi everybody

I agree, I'm also sure that it is definitely autoimmune stuff going on. I was that way for several years, my throat was sooo sore all the time, so bad that I would have bet it was strep throat, but low and behold, didn't the swabs always came back negative. Constant feeling of fevers with chills, flu like, etc, but no temperature even though my face was always hot, sometimes my temp was even below the norm too! Luckily after several years of that going on, it fizzled out for awhile; now I get it on occasion but not constantly any more -- hopefully all of yours will settle down too!

TJ, sorry to hear about your husband losing his job. I hope he finds more work soon. I'm with Amanda, this is a good place to vent because you are never alone! Take care.
Sending good wishes your way!

#16 ozzy69

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Posted 18 February 2009 - 03:28 PM

TJ,

I am sorry to hear about your husbands job. Sometimes it seems like we have so much on our hands and it is hard to see the good. Please keep your spirits up. I am sure your husband will find a better job. It will just take riding the storm out.

I know what you mean about the needles. It drives me crazy. Right now my hands are cold and blue and my feet are hot and burning. What a combo.

I am going to see my doctor on the 24th for my three month check-up and round of test. I always bring a list with of new things and listens and says that they could be or could not be related to sclero. We have not started any medications but lisopril (lisinopril) and reflux meds. We are waiting to see how it progresses.

Thank you everyone,
much hugs,
Nina Lynn

#17 TJ903

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Posted 19 February 2009 - 07:03 AM

Many thanks to everyone---and just as I thought it is not a dream. To make matters worse my night was spent trying to calm the cramps in both of my legs- sometimes I wish that it would all come at once so that we would know-okay this is it- this is what I have to work on.

Start that -to-do-list. Check 'em off one at a time, what a party we could have, A mini celebration for every bit of food consumed without pain, or gagging, every joint that freely bagan to operate, every dentist office where they say 'looks so good we don't even need to clean!' every bodily function that actually started to function, people who would actually understand what we are going through and--this is a biggie- Dr's (without egos) who research Scleroderma because they actually want to help us! That is the real dream I guess.

Thanks guys!

#18 debonair susie

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Posted 19 February 2009 - 07:26 AM

Hi TJ,

I'm sorry you had the sort of night you did. That sounds miserable!

I really LIKE your idea...it's a GREAT one! Sign me up!lol

As is often said,: If we're going to dream....dream BIG!

I hope that you have a MUCH better day than your night was, to be followed with a very restful sleep for your nighttime.
Special Hugs,

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