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Shaztwirl
05-30-2011, 08:25 AM
Hello everyone at WHL! I don't know where to start. Up until a week ago I'd never hear of Lupus. When someone mentioned the word and I read about it, it was like a lightbulb went on in my head! About 10 years ago I suddenly became photosensitive (although I didn't actually know it was called this until about 4 years ago). It was getting progressively worse every year.
About 8 years ago I had my rheumatoid factor checked. It was borderline then the symptoms disappeared (until my 2nd pregnancy in 2007 when I was treated for carpel tunnel and RA)
I have what I thought was high coloring on my nose and cheeks (now I know it's called a butterfly rash I look in the mirror and see it. I did always wonder why part of my cheeks remained pale)
I've been treated several times over the last 12 years for depression. Always accompanied by fatigue. People called me lazy but my body wouldn't allow me to get up and work!
I couldn't give you a history for headaches because I've never paid much attention until back in January I ended up in A&E twice because of them. They told me I had a viral infection (I felt like I had flu but the headaches were chronic). 2nd time I went back was when the entire right side of my face went numb. Still they said it was a viral infection.
I have signs of Reynauds but I've only looked for signs of this in the last couple of months when walking with my Dad and the purple in his hands scared the life out of me. Now I realise it happens to me too.
I've had tinnitus for years, have suffered intermittent nose ulcers, pelvic pain, restless legs. I've also miscarried 3 times (before going on to have 2 healthy children although both pregnancies were fraught with problems) and often have dry itchy eyes.
To bring an end to this long into, I was caught by the sun a couple of weeks ago and got some steroid cream for the resulting rash on my chest and hands from my doctor. Within days I could barely use my hands due to the joint pain and generally felt like I had been run over by a bus. I thought I was getting flu. Everywhere ached, especially the head again! With the nurse last week for a routine smear, I asked if she would take bloods to check my RF. Then I heard the word. Lupus. It all suddenly made sense. I went to my doctor last Thursday. He said he knew very little about Lupus but immediately referred me to a Rheumatologist (Lord only knows how long this will take). My doctor also asked if there were particular bloods he should take. I gave him a list like ANA, Anti-Dna etc. and he took these too. He said if they come back positive, he will nudge the Rheumy to get a quicker appointment. Now it's just a waiting game. Part of me would like to be diagnosed as it would give me a reason for not having been able to fulfill my potential over the last 10 years. Is it really that I'm not lazy and unmotivated but that perhaps I have Lupus? Sorry for going on so long. There isn't really any quick way to tell a story such as this. I may now rest for an hour as typing this much is exhausting LOL!! Regards to you all. I hope you are having a good day x

Shaztwirl
05-30-2011, 08:30 AM
Oops, I forgot to mention that since this last "bout of illness" my hands and eyes have been particularly swollen. I think if my eyes puff up any more, I may need a white stick and dog!

Gizmo
05-30-2011, 08:47 AM
Well Shatzwirl, your symptoms certainly sound suspicious for lupus. Are you being treated for RA? Autoimmune diseases like to run in herds, it seems. Your story is a common one in the lupus world, although when talking with doctors sometimes it seems like you are the only one on the planet with these weird symptoms. There are some great "stickies" on this site and if you read through some of the threads you should get even more insight into lupus. The people here are amazing and have so much information to share.

It looks like your children are still very small. I began having symptoms after my first child was born and I remember how difficult it is to care for little ones when you are sick yourself.

One suggestion I have (which you hopefully are doing on your own already) is that you avoid the sun and fluorescent lights as much as you possibly can. Put on at least 50 SPF sunscreen on all your exposed skin if you do have to go outside - even to drive to the store. Wear long sleeves and long pants and a hat. If that helps you feel better and decreases your rash, then you have photosensitivity. I was very photosensitive until I started taking immunosuppressants. It's REALLY hard to avoid the sun when you have children, but there are some clothing lines out there specifically for photosensitive people. Solumbra is the big one in the U.S.. I used to wear their sun protective gloves and they really helped. I can't afford much else that they carry, but other companies, like Sun Grubbies, have similar stuff for less money.

Peridot20_Gem
05-30-2011, 08:58 AM
Hello shaztwirl,

A lovely warm welcome to our family at WHL and there's so many threads to venture through which will open your eyes to what Lupus and autoimmune diseases can cause.

Refering you second reply ask your GP to get you refered to an ENT specialist as sinunitis which i have also is sometimes connected with TMJ Disease of the jaw which i have and the proper name is Temporomandibular joint disorder and it causes swelling of the eyes and also vessesl to break at the back of the eyes besides fluid building up overnight.

You sound like you also have Raynauds like me and i've had the butterfly rash in the past and used steriod based creams like yourself, to get a proper diagnosis of the raynauds you need to be sent to a good Dermotoligist and they'll run bloods to make sure.

The numbness you get i feel that from the sjogren's disease and also the eye irritation, so lets hope when you see the Rheumo your put under a good one who does tests on everything but i always say this, if you do have lupus or anything related it does fluctuate the bloods and can give off false readings, so sometimes it can turn into a grin and bare till you get something positive, it took 6mths for my anaemia to show it's ugly head properly.

Your not idol but all the other symptoms your suffering do come with this Disease and as time goes on you must learn to pace your body plus stress/depression Lupus thrieves on and will make you feel your symptoms even more.

It will be lovely getting to know you. Terri xxx

Shaztwirl
05-30-2011, 09:01 AM
In answer to your first statement, my kids are 7 (boy) and 3 (girl). After 3 miscarraiges, I was beginning to think it wouldn't happen! And in answer to your first question, I'm actually being treated for nothing other than steroid cream for any rash and Naprosyn (painkillers) for the headaches. Just rang the nurse for my first lot of blood results and my RF and CRP have come back normal. Should have my other bloods by Thursday.
I try so hard to avoid the sun. Luckily here in Ireland we don't have so much of it LOL! When I caught the sun a couple of weeks ago I was amazed at how I thought I had burned through a blouse and jacket. It was only my face exposed but my upper chest was so red and blistery! I find that I can't put suncream on if I already have the rash as it irritates it badly so I'm making sure to lather myself in it before I go out at all. It all feels a bit odd having to wear sunscreen when my hands are purple with the cold. Dealing with the kids is more difficult. As a single Mum, it is all down to me. They don't like me not paying so much attention to them and their behaviour is all focussed on getting it but in the wrong way. Sometimes they speak to me and it takes me a while to even realise they are talking to me and even longer to comprehend what they are saying. It's like I'm absent! They certainly feel that way but my Mum is good in asking them to particularly good for me as I'm not feeling well at the moment. There are days when I almost wish they weren't here but they also manage daily to make me smile! Thanks for listening x

Shaztwirl
05-30-2011, 09:18 AM
Thank you Tiger. I read a bit about TMJ last week. It sounds exactly like how I'm suffering. The face pain, headaches, jaw pain (clicking and almost locked) and the neck pain. My friend said to me a couple of weeks ago "Sharon, relax!" and rubbed me on the jaw. I realised that I couldn't actually relax my jaw and it made me quite sad to think that I couldn't actually remember the last time I fully relaxed at all! I will ask my doctor to refer me to an ENT. Thank so much for the advice.

Peridot20_Gem
05-30-2011, 09:19 AM
Lupus if you do have it can cause miscarriages and also stop you having children i'm 42 and never had any.

Yes you need to cover well my dermo as banned me from sitting in the shade for 10mins i look like i've been fryed so i know what your going through, so it's best to avoid it as much as possible, i used 50 block but alot of member's use 100 as it does help alot.

It sounds like your having foggness a great deal, your mind just totally blanks off from everything around you and if your going to do something half the time you end up doing something totally opposite.

We're all here for one another on the forum and we're one close family, so just carry on. xxx

Peridot20_Gem
05-30-2011, 09:27 AM
I'm adding some info on TMJ Disease (Temporomandibular joint disorder) in case it helps in anyway.

What is the temporomandibular joint?

The temporomandibular joint (TMJ) is the area directly in front of the ear on either side of the head where the upper jaw (maxilla) and lower jaw (mandible) meet. Within the TMJ, there are moving parts that allow the upper jaw to close on the lower jaw. This joint is a typical sliding "ball and socket" that has a disc sandwiched between it. The TMJ is used throughout the day to move the jaw, especially in biting and chewing, talking, and yawning. It is one of the most frequently used joints of the body.

The temporomandibular joints are complex and are composed of muscles, tendons, and bones. Each component contributes to the smooth operation of the TMJ. When the muscles are relaxed and balanced and both jaw joints open and close comfortably, we are able to talk, chew, or yawn without pain.

We can locate the TMJ by putting a finger on the triangular structure in front of the ear. The finger is moved just slightly forward and pressed firmly while opening the jaw. The motion felt is from the TMJ. We can also feel the joint motion if we put a little finger against the inside front part of the ear canal. These maneuvers can cause considerable discomfort to a person who is experiencing TMJ difficulty, and doctors use them for making the diagnosis.


What are TMJ disorders, and how are TMJ disorders caused?

TMJ disorders are a group of complex problems of the jaw joint. TMJ disorders are also sometimes referred to as myofacial pain dysfunction and Costen's syndrome. Because muscles and joints work together, a problem with either one can lead to stiffness, headaches, ear pain, bite problems (malocclusion), clicking sounds, or locked jaws. The following are behaviors or conditions that can lead to TMJ disorders.

1.Teeth grinding and teeth clenching (bruxism) increase the wear on the cartilage lining of the TMJ. Those who grind or clench their teeth may be unaware of this behavior unless they are told by someone observing this pattern while sleeping or by a dental professional noticing telltale signs of wear and tear on the teeth. Many patients awaken in the morning with jaw or ear pain.



2.Habitual gum chewing or fingernail biting



3.Dental problems and misalignment of the teeth (malocclusion). Patients may complain that it is difficult to find a comfortable bite or that the way their teeth fit together has changed. Chewing on only one side of the jaw can lead to or be a result of TMJ problems.



4.Trauma to the jaws: Previous fractures in the jaw or facial bones can lead to TMJ disorders.



5.Stress frequently leads to unreleased nervous energy. It is very common for people under stress to release this nervous energy by either consciously or unconsciously grinding and clenching their teeth.



6.Occupational tasks such as holding the telephone between the head and shoulder may contribute to TMJ disorders.

Shaztwirl
05-30-2011, 09:30 AM
Your comment on the fogginess made me laugh. Reminds me of the day I popped to the shop for a loaf of bread and came home with a roll of tinfoil. I could wrap the sandwiches but couldn't make them! I stand up and sit straight back down again so frequently the kids think I'm mad!

Peridot20_Gem
05-30-2011, 09:57 AM
Your comment on the fogginess made me laugh. Reminds me of the day I popped to the shop for a loaf of bread and came home with a roll of tinfoil. I could wrap the sandwiches but couldn't make them! I stand up and sit straight back down again so frequently the kids think I'm mad!
Oh mate, that did make me laugh, another member on here ages ago but the washer on with without washing in.

About a good month back my hubby caught me in the kitchen in a right daze, until he shouted my name christ knows how long i would have been there.

tgal
05-30-2011, 10:20 AM
I Just wanted to pop in and welcome you to the site. I have to agree with Gizmo about staying out of the sun and florescent lights as much as possible. She gave you some excellent advice in case you have to go out in it. Just a trip to the grocery store can send us into a flare. It sounds simple but it is a really an important thing.

The other thing I wanted to say is try not to put a name on every symptom. It does sound suspicious for Lupus or another AI disease so it is a good thing it is being looked into. As you may or may not know, there is no actual test for Lupus. There is a "sticky" (top of every thread) in the Newly Diagnosed section that talks about how Lupus is diagnosed. It is often diagnosed by finding out what you don't have as much as by what you do have. As Gizmo said, AI diseases tend to run in groups so try not to get bogged down with names of what each symptom means. Keep a journal of symptoms. Get a copy of your medical records (including all test results). Be prepared. Be your own advocate. Whether it is Lupus, another AI disease or something completely different you have to become your best advocate. You know that something is wrong and you have a right to find out what it is!

We are here if you have any questions or just need to vent. Welcome to the WHL Family!

I am glad that you join

steve.b
05-30-2011, 10:04 PM
welcome Shaztwirl,

your story sound similar to many of us.
finding out what is wrong can be easy, or a long drawn out proccess.
unfortunatelly ther eis not simple test for many of the auto immune problems.

the rhuematologist is a good specialist to see. he specialises in problems like what you are going through.

please take the time to read a few of the other threads. ther eis a lot of useful information available.

again welcome.

Shaztwirl
05-31-2011, 01:18 AM
Thanks everyone for the welcome. Believe me, I don't want to label anything. I certainly don't want Lupus or TMJ or Fibromyalgia or anything else for that matter. All I really want is to know that there IS something wrong with me and that I'm not going mad! Although there are some would say I went mad years ago LOL! I'd like to get up in the morning after 8 hours sleep (which I had last night) and actually feel like I've rested. I want to be able to strip my bed in the knowledge that I'll have the strength to put on fresh bedlinen. I want to be able to take the kids to school and not be exhausted at 9am for the rest of the day. Actually, turns out the list of things I want is really rather long. I'm sure it's the same with all of you. I shouldn't go on any anymore cos I'm having a really bad day and will probably just sit here and cry! I used to type 60 wpm with no errors. It's terrible spending 10 minutes or more typing a short paragraph cos your fingers and brain are working at different speeds and sometimes not at all LOL. Thanks again for the welcome. It's good to know that I'm not alone xx

Glibby
05-31-2011, 02:23 AM
Your story reads exactly like I would have written mine. I too have felt that lightbulb go off...and started thinking about years that have passed when people bagged on me and even got angry at me for being sick all the time, being forgetful, etc. It is a sort of validation, IMO. But at the same time i go back and forth...because i do not want to claim this illness at all. I believe it's part of the grieving process for me and probably for a lot of others also. It's one day at a time and learning to readjust. I'm in my infant stage as far as learning about lupus and I am still not sure what all of my DX's are...but the newbies will learn together and we will get our lives back...right?

It's good that you are here because there is a wealth of info no matter where you turn and since i have joined, everyone has been very nice and helpful. It's funny how you can gather strength from complete strangers. But it works!!!! So welcome to the boards....i think you will like it here!

Glibby
05-31-2011, 02:45 AM
Thanks everyone for the welcome. Believe me, I don't want to label anything. I certainly don't want Lupus or TMJ or Fibromyalgia or anything else for that matter. All I really want is to know that there IS something wrong with me and that I'm not going mad! Although there are some would say I went mad years ago LOL! I'd like to get up in the morning after 8 hours sleep (which I had last night) and actually feel like I've rested. I want to be able to strip my bed in the knowledge that I'll have the strength to put on fresh bedlinen. I want to be able to take the kids to school and not be exhausted at 9am for the rest of the day. Actually, turns out the list of things I want is really rather long. I'm sure it's the same with all of you. I shouldn't go on any anymore cos I'm having a really bad day and will probably just sit here and cry! I used to type 60 wpm with no errors. It's terrible spending 10 minutes or more typing a short paragraph cos your fingers and brain are working at different speeds and sometimes not at all LOL. Thanks again for the welcome. It's good to know that I'm not alone xx

Oh goodness. I FEEL what you are saying here.

I just wanted to add that for years I was also told everything I had was a viral infection. I've had the "flu" so many times I cannot recollect the the exact number i was told that. I was written RX's for antibiotics so much...I'm pretty sure most antibiotics would have little or no effect on me if I do come down with a bacterial infection. smh I was finally diagnosed with Fibromyalgia, degenerative disc disease...and wow...for the life of me I can't remember the other one. Can you believe that? lol Brain fog is the pits. lol Hang in there, girl.

And yep, go on as much as you'd like. I think you can feel safe when you come here to vent. In all honesty...no one is going to understand you like each and every person here. That's just the fact of the matter and although the ideal situation would be for our closest friends and family members to understand....your illness will be hard for them to wrap their minds around at times because they don't walk in your shoes. When that happens...come here.

Peridot20_Gem
05-31-2011, 03:07 AM
Hello Shaztwirl,

We all feel the same as you and it either makes we angry or sometimes cry and i really do hope it's nothing serious for you but if you do have anything show it's a life of adjusting, i only told my hubby lastnight that this lot is eating away at me and making me angry in myself.

I FEEL STRIPPED OF MY LIFE

Shaztwirl
05-31-2011, 05:18 AM
You are all very kind. I don't like to moan but it's nice that I can do here. I've been searching my mind for 2 days now for a word . . . for what I'd like to happen. VINDICATED!!! I found it LOL Got all the signs today of Carpel Tunnel. Haven't been treated for that for over 4 years. Serves me right for typing such a long intro yesterday. Looks like I'm justified in not changing the beds today after all. Every cloud has a silver lining, isn't that what they say? LOL. I've decided to go with the laughing at myself option rather than the crying option. Although the kids think I'm mad whichever option I choose. I hope you are all enjoying a day as free from pain as possible xx

Peridot20_Gem
05-31-2011, 06:36 AM
Hello shaztwirl,

So you found you word vindicated so you don't feel blame as you've justified yourself, very good comment actually.

Well carpel tunnel is'nt one thing i have, so therefore i don't know what your going through and it does'nt serve you right for stating what's been happening and also what you've been going through and changing the beds won't hurt for one day unless they seriously dirty. lol
Well you keep to your laughing option and i'll stick to my crying option, i don't have much choice half the time being a manic depressive and it seems to last longer lately.

Well i'm still drugged had to take valium lastnight it keeps my head carm but with pulling out of it with my other meds is a total nightmare but besides everything you've said i still hope your day is on an even track.

Terri xxx

Shaztwirl
05-31-2011, 07:02 AM
Oh Terri, I really feel for you with your depression. If I added up all the time I've spend on anti-depressants, it would add up to a good number of years. They were my best friend for a long time. I'm working hard on not becoming depressed and making myself carry on as much a normal life as I can. My carpel tunnel symptoms seem to have disappeared as quickly as they came. 3 hours was long enough for them! Back to the sore joints, headaches and purple hands/fingers for now. Even my mother suggested buying some white gloves today, which is something I've seen mentioned in one of the other threads. I've decided though to change ONE bed today. Mine of course. I deserve it. Wishing you well.
Sharon xx

Peridot20_Gem
05-31-2011, 07:22 AM
Hello Sharon,

Thanks for letting we know your name.

I feel for myself with the misery of it, like yourself took anti-depressants for over 25yrs, well lets say i've took a right cocktail and the pharmacy, they can put me on some, say it's 2 tablets a day oh my personality does boost up and within a short time i drop back and need more, so my psychiatrist won't allow it no more, mind you he's a brilliant bloke. With manic depression it does hit you out the blue and it's a living nightmare, withdraw symptoms, not wanting to do anything, you more or less give up until it over rides but with everything i'm going through i'm feeding severn trent at the moment refering crying and really no one should be getting bills. lol
I can't definitely say but if you've got purple hands that's raynauds because my fingers go like that, i'm typing now in white cotton gloves, i buy them from over the road as we have a shop for dying your hair all that stuff and they sell for 2-95 and i by a fresh pair every week but if you put cream on your hands before the moisture makes your fingers more warm.
Sore joints is another issue knees, fingers and knuckles swollen and red and it travels through my body, they offered me prednisone to take the swelling down but being a steriod i refused but the drug counter reacts with my tegretol anyway.
We all understand about the heachaches they're murder at times, years back to numb my head i used to hit it against the walls in the home, i've stopped it now and that might sound bad but it numbed the front of my head.

Well i hope changing your bed goes well mate and enjoy your day the best you can.

All my love Terri xxx

Shaztwirl
05-31-2011, 12:07 PM
Update on the bed . . . I went and stripped it and brought the linen downstairs to put in the machine. Whereupon I discovered the washing machine was already full so I had to empty it and put the clothes in the dryer. Which was also already full so I had to empty it and sort the laundry and get it put away. Needless to say after all that, washing up from last night's dinner before cooking tonights and getting the kids to bed etc., my bed is still naked! I have visions of sleeping on bare mattress tonight!

Peridot20_Gem
05-31-2011, 12:37 PM
Oh Sharon,

You have had a day of it mate...i told you the foggieness does your head in and your clothes could have been in the washer all day if you had'nt of stripped your bed.
Refering washing up my hubby as been the chef for 10yrs lol loves cooking and because of my hands he washes up and i dry and put them on the next work surface. I struggle with my walking but i still have to do things slowly so he helps me a great deal, i'm very lucky in that way.

You could keep your visions of a bare mattress till tomorrow and sneak in with one of th kids. lol

Shaztwirl
05-31-2011, 12:41 PM
"and your clothes could have been in the washer all day if you had'nt of stripped your bed."

Ehm, I think they've been there about 2 days? LOL

Peridot20_Gem
05-31-2011, 02:10 PM
OMG mate that's the best sharon...your coming out with some right crackers .lol

Shaztwirl
06-01-2011, 01:16 AM
I'm a little bit shocked today. Appointment with Rheumy next Wednesday 8th June. Thought I'd be waiting months and instead it's only 2 weeks!!

Peridot20_Gem
06-01-2011, 01:41 AM
Well i'd be happy if one came through the door for me not shocked and i hope it all goes well and keep we updated or make a new thread on what happens.
I was due to see mine the 8th August.lol and then i had it cancelled, phoned them up and apparentley the doctor's want patients to know 5-6wks before they are due, i mean it ah on because the amount i have on already in appointments this month alone what if collides with another appointment, then one or the other as got to be changed again.

Shaztwirl
06-01-2011, 01:56 AM
I was going to say that this is only the beginning of my journey, but I guess it started years ago. Maybe it would be more appropriate to say that this is the start of the next phase. I dread to think what's next really. I'm starting with my own GP (again) tomorrow as I can't cope with the swollen eyes anymore. I hate that I'm going so often and yet at the same time I want every little thing down in my notes. I've had to start a proper diary cos I can't remember what I had for dinner last night, never mind where I have to be next week and who's party the kids are going to etc. If there's something I need to do, I have to do it straight away or write it down or it could be days before I remember again LOL. Now I've got to try to get people to take the kids to school and playgroup and collect them etc as the hospital is over 60 miles away so it will be like a day trip for me. My head is swimming just thinking how much I have to organise just so I can see a doctor. But at least things are moving, and quickly. I hope you are having a good a day as possible xxx

Peridot20_Gem
06-01-2011, 02:34 AM
Really sharon it sounds like your symptoms needed sorting years back but what you saying makes sense writing stuff down for the doctor and also what you have to do, when you see the rheumo they usually like some history off you also, so take what your writing down and they take bloods and sometimes x-rays and hopefully when you see the rheumo again you should get a diagnosis unless your bloods play up on that day and give off false reading's but if they do find something they may send a letter to your GP also.

I wish you all the best in sorting your kids out, this lot can cause some trouble it does my head in at times.

I hope your day goes ok mate,as i'm off to get dressed.lol xxxx