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Cami
01-20-2008, 07:44 AM
Last year I visited my doctor with a list of symptoms that looked like a grocery list for a family of 12 (extreme fatigue and joint pain top the list). I had just completed a tremondously arduos and stressful task at work resulting in a promotion. I assumed the stress and my recent entry into menapause was the cause of my poor health. She looked at the rash across my cheeks and nose as I clicked off the list and told me that it sounded and looked like Lupus. I had no idea what Lupus was. She did the blood work and set me up with an appointment with a rheumatologist and a dermotologist.

At my previous visit with this doctor, she concluded that I had degenerative disc and joint disease. She ordered an MRI for a bone density scan. Doctors at this same place of practice (HMO) had been treating me for kidney stones for about 2 years but I never passed a kidney stone, I just had extreme pain. She told me that I didn't have kidney stones. I was sent to physical therapy for the second time. In the past I'd had trouble with lower back and hip pain and was treated with physical therapy.


The blood work came back with no indicators of Lupus. There was traces of blood in my urine which has been a common occurance over the past many years. I have had urinary tract infections on a regular basis.

The rheumatologist, who spoke in third person calling himself "Doctor" did a visual exame and concluded that it was not Lupus but wanted to give me steriod shots in my hip joints which were particularly hurting. "Do you want Doctor to give you a shot where it hurts and make the pain go away?" I refused and left feeling disillusioned.

I went to a dermatologist and saw the assistant who told me I have adult acne. She treated it with an oral pill and a topical gel. The rash is still on my face but is much more quiet.

OK, a year has passed I still have the rash on my face and I'm still in pain which I have assumed I will live with the rest of my life. Sometimes it's not so bad, other times I can barely walk. But now something new has started. My ankle went out, I had to lean against a wall or fall down. It only lasted a minute or so. But the next day my knees went numb, sort of like a pre-paralyzed state and I felt unwell all over. I called the doc's office who told me to go to the ER.

The ER Doc told me it looked like MS. She ran blood tests, did a chest xray, a CAT scan of my head, and an ekg. Another thing I forgot to mention, when I was a teenager I had restricted paracarditis. My paracardium was removed from my heart. I have an enlarged heart with arythmia and a very low heart rate. My gosh, I sound like a mess.

I followed up the ER visit with a neurologist. The neurologist did not think it was MS but she said it looked more like Lupus and she set me up with an appointment with another rheumotologist. She also asked me to talk with my cardiologist about the restricted paracarditis that I had years and years ago to see if he thought there might be a relationship with the current symptoms.

So I followed up with my cardiologist. It turns out that he, the neurologist and the rheumotologist all know one another. In fact, he walked my paperwork to the rheumotologists office and got me a quick appointment. He can't draw any links between the restricted paracarditis and the current situation because he does not have the paperwork from that surgery. (this happened years and years ago in another state)

This is a book. Sorry but it feels so good to write it out.

Now, my husband. I don't know how to deal with him. He is younger than me by over a decade and has a lot of energy. I come home from work and just want to crash. I have no energy left. I'm exhausted. Every weekend he wants me to go hiking. He thinks if I just start getting more exercise I will get better. But I am so tired. I can't even place an emotion on the feedback I am getting from him. I feel like I am alienating him. So I went hiking with him and my son and daughter-in-law yesterday. It felt humiliating. I was in so much pain and had such shortness of breath. We got near the car and they wanted to conitnue, all I wanted to do was get off my feet and rest. I told them to go on without me. I was nearly in tears and I didn't want them to see it. I finally convinced them to go and then I had a good pity cry.

I see the rheumotologist this week. I hope I get some answers.

Thanks for listening.

Cami[/list]

Saysusie
01-20-2008, 10:15 AM
Hi Cami;
One of the best things that you can do for yourself is to educate yourself about auto-immune diseases (such as Lupus). Most people feel that the butterfly rash is one of the primary indicators of Lupus. However, you said that your blood results were negative? There are those who have Lupus even though the blood results are negative. Lupus is a disease that changes (symptoms come and go, new ones appear etc.) and it is a disease that goes through remission (little to no disease activity) to relapse (disease is active). Due to this, blood tests can sometimes be positive and sometimes be negative (especially ANA).
One of the other things that we suggest is that you find a rheumatologist who cares about you and who you are comfortable with. Being spoken to like a child is demeaning (in my opinion) and you do not have to tolerate it. If you become educated about auto-immune diseases, their symptoms, treatments, medications, etc., you can make informed decisions with whatever doctor you choose.
Also, it is a very good idea for you to start to educate your husband about these diseases (especially Lupus if you feel that is what you are suffering from). It is very important that our significant others know just as much about our illness as we do. In that way, you will not have further misunderstandings about your symptoms, your fatigue, your emotions, your reaction to medications etc. etc.
Everyone here is willing to help you in any way that we can, please come to us at any time and we will do all that we can to help you and your husband. I wish you the very best!

Peace and Blessings
Saysusie

sick n tired
01-20-2008, 06:21 PM
Hi Cami,

I am not sure how you and I have the same husband, but there seems to be a great similarity. All kidding aside, my husband has come around in the last few months. I think that he bought into the "all in your head" junk that the other docs were saying. He has also had the same attitude that if I would just get going then it would all go away. He also loves to hike. I feel your pain on that one. Two years ago we went on a family camp in Arkansas. They were having a heat wave that month. I did everything that my husband and kids wanted me to do but I was never able to complete the hike or the ropes course. I felt fat and old. Now I can bring that up in retrespect and tell my husband why I was not able to do it.
I went on a huge hike in Virginia with him right after the first initial diagnosis of lupus. The pain was awful. Now hubby has done an about face in attitude. He thought that he was going to lose me so it became very real. Your spouse hopefully will come around. Get on the internet and show him what you are faced with. It helped when he did that and came to the doc with me.

:lol:Do you want Doctor to give you a shot where it hurts and make the pain go away?" :lol:

How old do you look? Because that doctor must have thought you were 2 or 3. I am sure that it would have been all I could do to not answer in the voice that one uses with a baby. the only thing that was missing is that he didn't want to kiss your boo boo to make it better...ewww......yucky mental picture.

Well welcome to the family.....obviously you have something, but it sometimes takes a long time to diagnose. Keep in touch with all the doc says and let us know.

With a whisper and a prayer,

Karen:B-fly:

Oluwa
01-21-2008, 07:53 AM
Oh, come here Cami, let the doctor have a look n see...I hope you got a lollipop after that..sheeesh. So silly of him, I felt my eyes well up for you instead of rolling into the back of my head. And I even have Sjogren's too...little tears. Lenses like potato chips.

A great read to start arming yourself with Lupus knowledge is The Lupus Book, Third Edition by Daniel J. Wallace, M.D. Share the words with your husband, maybe this will start him on the path to understanding.

My husband gets it, then he forgets he got it and then he'd learn all over again, only to forget it again. My response now is, I would love to but you know Luuuuuupus or no, not well today I have to keep Lupus company, perhaps tomorrow. Raincheck. Something along those lines.

I am sorry you cried alone, feeling alone without understanding. I feel your pain. It hurts sometimes more emotionally then it does physically, eh....hugs, squeeze...

You can feel safe here, I do...and never apologize for expressing your pain here. Otherwise all we would read is..I hurt, I'm sorry. I ache, I am sorry. My mind is mush, I'm sorry... No apology ever needed for sharing your pain...beside it makes the post twice as long and well, mine are usually a book too.

Until you can a better diagnose, eat for nutritional value, pace yourself, cut your to do list in half, care for your joints, avoid sugar, Splenda is okay, try stretching, floor exercise and breathing techniques ILO hiking....Sometimes excessive exercise cause more damage and pain. Try heat therapy on your joints, sometimes ice is better. But read the book I mention it is a wealth of info.


Worry not what they think, just do the best you can. Oh, and I am 10 years and a few months older that my husband and in the midst of an empty Easter basket too. Aren't the private Summers dampening...?

You want Oluwa to give you a hug... :shock:

Be well,
Oluwa

Suzique
01-21-2008, 11:35 AM
Cami,
Well, aren't we all a group? I am 11 1/2 years older than my husband! We moved to Washington State, because of our love of the out doors and hiking, then I developed full-blown Lupus (the doctors couldn't make their minds up for years with me, too). Now he either goes on hikes by himself, or takes me to a park or somewhere that my wheelchair can go (I have been in a wheelchair pretty much most of the last 3 years). Amazing how many places we have found that we can maneuver my chair, so that I can go. I go through horrible periods of depression, thinking of how old and fat I look, and he is so young and good looking. But, he loves me very much, and I have to remind myself of that.
I think we all have gone through the learning process with our husbands and others. There is a mourning period for the healthy you that once was, and that generally begins with denial. "You are not really that sick..." It is not that they genuinely don't believe you, they just don't want to believe you. As encouraged by the others, education is the key. Learning about inflammatory diseases, particularly Lupus, since it looks that way for you, helps to make it real and dispel disbelief.
I write books, too, as my thoughts ramble one into another, and this site makes me feel so at home. Let the warmth flow over you and pour out those feelings that you need to express.
Welcome, hugs, and prayers.

Susan

Oluwa
01-21-2008, 12:02 PM
Hi Suzique..

Do you still have colored eggs in your basket?

How wonderful it is to see a few more who fell in love with men who happened to be younger. No intent on my part...

Indeed, being not well, with cellulose and a younger male spouse to boot...can bring me into a topsy turvy kind of day at times. Though I am guessed 10 year younger, my body feels old. And feeling that way I wonder how much am I affecting a fulfilled life for him. Sometimes that makes me more depressed, sad than being ill..

Egads...ooops. I digressed a bit, eh? I was going to delete it but, naw, it is my heart this minute. More compassion for his life than mine at times...

Boy... that is a hard dry ball of sadness I just created in myself, to swallow down....give me a minute while I get it unstuck...

Regrouping..
Love,
Oluwa

sick n tired
01-21-2008, 08:32 PM
,

Hey Oluwa!!! Don't be down............... :multi:
I am 8 years younger than my hubby, but he is so fit and healthy that I think that I look and definately feel old enough to be his grandmother.

...Ok..gross exageration....just old enough to be his mother(tee hee) :lol:

All kidding aside, there are many times that I do get down that I can't do the same things that others my age should be able to do. I just told one of my daughters that my goal for the rest of the week is to get the master bathroom cleaned and make dinner. That will be 50% more than the last few weeks............Go Me!! ......... Can't you just hear the crowd roaring?


Oh, where are those pom poms when I need them?


All together now...

2cents, 4cents, 6cents, a dollar
All for pain free stand up and holler!!!!!! :onfire: :onfire: :onfire:


Here's for a pain free week,
Karen

Oluwa
01-21-2008, 10:14 PM
I have my saddle shoes and anklets on hollering with you, Karen....you made me roar, 2 cents, 4 cents, 6 cents...rolling all over the floor. I have such a visual.

Thank you for adding color to my world. I will sleep well. Another day for me tomorrow, I will make the most of it.

Sweet Dreams, Karen...It's pumpkin time for me.
Oluwa

Oluwa
01-21-2008, 10:44 PM
Hi Cami...

Checking in on you...how was your Monday and Tuesday.

Have you been to your doctor yet or is that later in the week? I do hope things have settled in your spirit and it isn't filled with guilt, frustration.

Your pattern of symptoms sounds just like mine. I've had 3 back surgeries...facial rash, malar and etc. Perhaps they will treat your symptoms without a specific diagnose. You could be one of the percentage that tests negative, but may have it...crazy, eh? And frustrating... Plaquenil does my body wonders. Fatigued, weak at times still..but today from yesteryears..wow. Much better.

Keep us posted on You....
Keep looking for your wellnes.
Oluwa

MommyKaren
01-22-2008, 07:19 AM
Cami,

Keep your chin up, the advice given here is fantastic. I can't add much else. My doctor believes I have Lupus but my ANA was negative. I went through years of feeling I was a hypochondriac and that I was tired and achy because I was a mom. I have other indicators in my blood work that it is probably Lupus but not the main one most doctors use for dx.

A supportive husband helps a lot. My ex-husband said that all I did was complain.. He was a major stress in my life and I started feeling better after we split. But listen.... I'm not saying to get rid of your husband!! Mine had anger issues and it wasn't good for my kids. He was mentally and borderline physically abusive to my kids. I "had" to get out.

I know that fatigue can be horrible. About a month ago, I flared and couldn't do much around my house, I was sleeping 9-10 hours a night and was still exhausted. Exercising is important, and does help you feel better, but from my experience, when I am that run down, you need the rest, then when I start to feel better, I start to exercise again, SLOWLY.

Big hugs and there is a lot of wisdom here. I sincerely hope you find some answers and feel better!!

Karen

Cami
01-22-2008, 01:23 PM
Thank you to everyone who shared information and heart felt support. This has been such a roller coaster ride.

Today I visited a NEW rheumatologist. She spent an incredible amount of time with me. I took the advice from other posts I have read on this site and made a list to take in with me. I listed my medications, my symptoms and my history. I feel as though the doctor really heard me today. She pointed to some information in my medical history which I had forwarded to her from my primary caretaker. The fact that she took the time to read my history and hear what I had to say instilled confidence.

She does not feel that I have lupus, pointing to my blood work. She said that it would be less than a 1% chance that it was indeed lupus. She also noted that there is a patch of the face rash on my chin and my forehead, telling her that it is not the malar rash but rosacea. The rash also responded to the treatment prescribed by the dermatologist, which also tells her that it is not a malar rash. At this point, she is not totally ruling anything out. She said she may do a biopsy of the rash after some other tests have been run.

I have restless leg syndrome. I've had that for over 30 years. She asked if I snored (sleep apnea). She is looking at my sleep patterns to see if that will explain the fatigue. I don't snore by the way, I called my husband at work and asked him to be certain. My husband, who really is a wonderful guy, wants to buy me a new mattress now. He just wants me to be well, you know?

Xrays show that I have osteoporosis which I guess explains the joint pain? She ordered an MRI of my hips.

I just returned from having a series of blood tests taken which she ordered.

No more hiking, at least not for now. She has asked me to walk on my treadmill 5 minutes a day. I can do that. That is doable and now I have a 'doctor's note' so to speak, to excuse my guilt from hiking.

And that's the scoop. Nothing definite yet but I feel like I have a doctor who is - on the job - finally.

In just this short time, I feel the strength of this community. Even if it turns out that I don't have lupus, you have offered me hope and smiles and wonderful support when I was feeling rather desperate.

I will stay in touch.

Warmest wishes,
Cami

sick n tired
01-22-2008, 03:30 PM
Hey Cami,

Hey Cami,

Congrats on the rheumy find!!!!!!! I know when I found my present one it was real relief. I could trust what he had to say because he didn't form an opinion without talking to me. (of course I have never had a doctor talk to me like I was 2 that was unique) Anyway, I am excited for you because you might be able to get on with your life.

As well as the "doctor's excuse" to not have to hike or other things...........I totally understand. I thought if you got a doctor who was able to explain something then your hubby, who loves you, would get on board. Mine is almost over the top on the other side. We have to learn how to go on and what is our new 'normal', one that now encompasses the chronic illness.

So maybe soon the above 'cheer' will be yours and your doc will get you totally pain free.

Here's to a painfree future,

Karen