So Confused & Miserable

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AP91172
New Member


Date Joined Aug 2014
Total Posts : 4
   Posted 8/31/2014 9:55 PM (GMT -6)   
I am 41 & I am so desperate for answers, and to feel better. I don't know what to do anymore. I feel like I cant go on like this, and it really feels like I wouldnt even be missed sometimes.I dont know how to make my family understand how I feel. My story starts about 4 yrs ago, and would take to long to even type it. Ill give the main points, and maybe somebody can give thoughts and ideas on what to do next.I started having confusion,dropping things,not being able to get words out,head/neck hurting in the lower back of head and eck, etc 4 yrs ago. It worried me, but I had no insurance, so blew it off as stress.Three yrs ago I became exhausted feeling,hot flashes. By noon at work I wanted to just go to bed, and would get home and go there. I got sick out of the blue, very quickly at work one day(March2011) with diarrhea. By the time I made it home I had an extremely high fever. I stayed in bed and bth rm for days.This may have been some random thing,or maybe even food poison, but have never felt good again since. B June I just couldnt do it anymore, and quit my job. I was having what I think were heart flutters or palpitations, very bad dizzy spells, felt like I was going to pass out,shortness of breath, and extreme exhaustion even just walking across the house. I had some swelling in my hands, and a few instances where I thought i might be having a stroke because of hands drawing up, and numbness in my arms, and face. I still had no ins and just couldnt go to the dr. In Feb 212 I got insurance and went to the dr. they put a heart halter on me, done a breathing test,etc. Results of as Dr said it. Extreme Lung Obstruction(he said meant emphysema), Stress test-blood pressure would not go up at all, as I walked and they stopped it,& High cholesterol. He put me on cholesterol meds, and a beta blocker. I didnt go back to that dr. I broke out with a rash n my chest, that itched really bad, but I just dealt with it the whole time until this year in April. It started moving upward to my face, upper arms, upper back. At the same time a strange spot showed up on my arm I couldnt take the itching, and hurting on my face and went to the dermatologist in May. She said rash was the PR Virus(anyone hat knows what that is, u dont have it 14 mths), done biopsy on my arm. She gave me 2 wks of antibiotics 2000mg a day, even though she said it wouldnt help a PR Virus??? I was confused. Biopsy on arm was squamous cell cancer, and went back to cut that out. She said come back in 3 mths for check up, and the pr virus rash would be gone too. Needless to say, I was not comfortable with her answer on rash at all. I went to a MD here, and all she kept saying is I was underweight and that will cause all my symptoms. done the basic blood work like all of them(CBC,thyroid) and did send me for CT in case she was missing something(showed normal) 2 weeks later another place quickly popped up on arm an 1" away from first place, which also seemed to not be healing correctly. The rash has steadily gotten worse, with new places coming up sev times a wk, sometimes daily. I went to another derm. Aug 8th, he said rash is most likely Discoid lupus, done biopsy on face an said we will see what it shows, and send u to Rheum. if positive because of all my other symptoms.Aug 16th, It was pos.,and by now hands were swollen, my whole arm from shoulder to fingers hurting he called Rheum. said I need a steroid shot and he was giving it if he couldnt see me in a few days. I thought thank god, though I sure dont want to have anything, at least I finally had an answer & could at least start getting treated. It literally was the first time I felt like a Dr was listening, and cared. He could look at me and see I wasn't pretending about how bad I feel.Rheum. said he would see me in 2 days, dont give the shot. I went to him the 26th, he ran through questions so fast i couldnt explain nothing, he said from what I had told him he wouldnt diagnose SLE, but obviously have the discoid. He put me on hydroxychloroquine. Why would he put me on that and wouldnt say it was sle? He ran reg. blood work like the rest(cbc, thyroid). Whywould he not order the other blood test, like the ANA,etc.? I am so confused on all of this.I feel like I am getting worse by the day, and am really worried. Today my knees hurt, other arm,feel like my legs are swelling up. My symptoms are blurry vision, really bad forgetfulness,confused,absolutely no energy(cant hardly lift my arms), eye sight getting worse, nausea, pain in joints,swelling,eyes sweling itching and burning, musclessore and weak,some lymph nodes swollen(under arms, neck), started getting hoars and hard to get throat cleared the past few weeeks. Lord i think thats enough. Thanks for input

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/31/2014 11:06 PM (GMT -6)   
The medicine they put you on will help if you have SLE or Discoid, but it can take a few months to fully kick in.

Are you protecting yourself from UV Rays? Sunlight, fluorescent lighting, CF bulbs, and halogen bulbs all emit UV rays. There are several places that sell UV protective clothing.

You might want to ask your rheumy if there's something more he can do to ease your symptoms while you wait for the Hydro. to kick in.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

AP91172
New Member


Date Joined Aug 2014
Total Posts : 4
   Posted 9/1/2014 12:28 AM (GMT -6)   
Does discoid make you swell up, and hurt? Or my other symptoms? My concern is how fast things are really getting worse all of a sudden. If the Rheum doesnt think my symptoms are enough to say lupus, then what is causing all of this? I dont want something else to be wrong and not know it. Why would he not do the other blood work& see what it says?
My derm did tell me no more sun ever, with the skin cancer and discoid. Honestly I haven't hardly even left my house except a couple times besides my 7 trips to the dr this whole summer. My tiredness is so bad I just cant seem to do much of anything. The times I feel a little better, and I am trying to get something done like cleaning, or bills the blurry eyes, dizziness, and thinking problems mess that all up. Turning my head, or blinking my eyes makes me feel this way a lot. It sometimes feels like maybe its a problem in the neck or back of head. My neck hurts all the time. These are the most debilitating things for me.
It feels like most of the DRs are blowing me off, or something. My arms,fingers get numb & tingly all the time. They have been doing it off and on for like 3 yrs. Now they stay that way most the time. In the beginning of summer i was trying to work in our garden one early morning picking grass, and when i stood up my leg felt like it was asleep. I went on about my business, and realized a couple hrs this just wasn't going away. The whole top of my foot was numb/asleep and leg tingly bad for days. Decided not to wait the week out for my upcoming recheck and went on in, cause this is just not normal. The Dr did not even comment on why she thought my foot and leg would be this way. To this day my foot is tingly, not asleep so it got better, but it will not go away. I also have back pain like hundreds of folks, and have for yrs.(never had it checked on what is going on) There have been times I go down with it and have to stay on a heating pad & things for a week or more to get it better. That is also getting a lot worse, and waking me up all night. Why does everybody else I know get their back checked to see whats wrong, and all these other things, and when I finally cant take any more with something, and break down and go they act like they don't even hear me, or its like well everyone has that problem, no big deal. Is it because I dont go n there and act like Im dying w/ pain? I dont understand! I already don't want to go in saying what all is really going on, because I feel like a hypocondriac (however u spell it). I never ask for any kind of meds, especially pain meds., but I have times I hurt so bad. What I am saying is, its obvious I am not one of these people in there to just try and get pain meds. It makes me feel stupid, and like giving up on trying to find help to ever get relief, & feel better.
Should I keep towards lupus, or is there someone that has these symptoms that is caused by something else?
I do feel so lost and desperate
Thanks for reply Joy

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/1/2014 2:44 PM (GMT -6)   
Go to a back specialist and tell him what's happening. I found out my pain was due to OA. The joints were degenerating.

I have the same issue with putting on a "brave" face for the doctors. I don't want to be labeled a hypocondriac either. My SSDI hearing is next month and I've got to remember to not to put on my brave face or they won't believe me.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/1/2014 6:17 PM (GMT -6)   
Hi and welcome to our forum I'm sorry that you need to be here but you've come to a good place to get advice. Joy gave you some excellent advice about the medication you've been given. It works for both types of Lupus, but like she said it can take up to 6 months before you feel the full effects.

As far as getting the DX for SLE, some of your symptoms do match SLE, however, they also can go with your discoid. I know that the Plaquenil can cause stomach upset and diarrhea in many folks. Some patients bodies get used to it and others don't. Did you get the generic version of the drug or the brand name. Sometimes, getting the brand name makes a difference in the side effects. It can also affect your eye sight so I'd suggest you see an ophthalmologist too.

Lupus is known as the disease of 1,000 faces and it's very difficult to DX and sometimes it takes years to get a DX and treatment. Some patients who have SLE have more skin and joint issues rather than organ involvement and then folks like me have loads of organ stuff but little skin. It took my doctors over 13 years before they started to treat my SLE. Yes, I'm very sick with mine and I'm now beginning to have skin issues that I never had in the past. I understand your frustration.

It sounds like you'll need to see a different Rheumy. I'd suggest that you write down EVERY symptoms you have in a journal, write down your pain, where it is, the level of pain, and what helps receive it if anything thing. I'd take photos of every rash and swollen joint so that they can see what you look like when you're in a flare.

Speaking of flares, it's possible that you're in a flare up of your Discoid and that's all that it is. You also should maybe have them check your for Fibro as Fibro is common with lupus and Lyme Disease a lot of the time can appear to be lupus. I'm not saying you don't have SLE, but I'm saying that you could have something else all together. Have you gone to the lupus foundation and gone over the 11 symptoms of lupus. You must have at least 4 out of the 11 to get the DX from the doctor.

I know when you have overlapping issues it's very difficult to tell whats affecting you at times. I have RA/Lupus/Fibro/Leukemia/Osteoporosis/OA severely. So, when I'm feeling really bad I have days when I can't tell which disease is making me feel so sick. Sometimes my labs can help solve that puzzle but most not. I truly get how frustrated you are and how down you can be.

I'm in a constant flare up and I NEVER feel well. I'm in constant pain 24/7, I have great pain medication to take. However, I refuse to spend day in and day out in a complete stupor. So, I make choices each day as to whats the most important thing I accomplish and I do it. I'd prefer to stay in bed with my covers up over me, but I have a daughter whose 21 and I felt I needed to send her a strong message that you never quit, no matter how hard it is.

I'm truly sorry that you're feeling so poorly and I hope that you call and can see a different Rheumy and get some additional testing down. If SLE is ruled out then I'd the other and see someone else to be tested for the above mentioned items. Welcome to the forum, please feel free to come and vent at anytime and let us know how you're doing. Hope you feel better really soon.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

AP91172
New Member


Date Joined Aug 2014
Total Posts : 4
   Posted 9/2/2014 12:35 AM (GMT -6)   
Thank you again Joy, and prayer for your hearing. Thanks Barbara for your welcome, and your info. I was totally desperate when I found y'all yesterday.
This swelling & pain(besides back) is new to me, I cant believe how fast this is happening. I woke up today with my legs now in pain, just over night. Like my whole bones hurt not just joints, from hip to knee. Tingling a lot. It is very scary, and over whelming. The not knowing for sure what is causing all this, if its going to get better, worse, blah & blah is driving me crazy.Ive been depressed for a while now, cause I felt like nobody would ever figure out why my head felt this way, and why i was so tired. Then when my forearm starting hurting in June, I have been a nervous wreck since.I am afraid this other spot that came up on my arm, beside the cancer they were suppose to have gotten(Im not sure of) has been here to long. Ive been worrying the whole time it may have went to my blood stream because of the pain in that bone, and the way my lymph nodes swelled up under my arms and neck area the last 8 wks. I def pray that is not the case. I will go for that biopsy on my BD Sep11th. Now all the other in the past 2 weeks. Im sure yall know exactly what I mean not knowing if hes the right Dr, which kind of Dr do I need to see,does that one know what hes talking about, etc. I just do not know which direction to go. I think I am going to call the last derm I saw 3 wks ago that finally done the biopsy for lupus and cared, and ask him about another Rheumy and his opinion on the one he sent me too. I know he thought for sure I have systemic, and I wish now I would have told him to go ahead with a steroid shot. My body is so tense, I feel like I need a muscle relaxer.
Another thing I think about, is I am fixing to be 42. My daddy died at 43 in 95 w/ Multiple Myeloma. His only symptom was back pain, until he went down at work, and went to hosp. He was in so much pain for the next few days we couldn't even talk to him. Finally air lifted him to a hosp for back surgery, and when he got there they said they couldn't do surgery, something else was wrong. his bones were like rotten wood, completely eat up like swiss cheese. How in the world had he been working every day?His mind, oxygen and everything was crazy while we waited a couple days for his culture to grow for a diagnosis. That day they told us he is not going to make it with this cancer Even today 2014 and how far treatment has come for MM, it was just to far gone. within about 3 hrs he went to ICU, on to a respirator and never woke up again. He laid there for 4wks, I guess brain dead until his heart stopped March 21st. It was absolutely devastating for us, and I guess it still is. My mother was 41 and has never moved on at all. I guess myself and both little brothers really never have either.
He was such a good dad, but most of all a good person all the way around to everyone. I need him so often for help, advice, and right now to read me the bible like he tried to do when i was a teenager and didn't always want to hear it. My kids, and what he taught me is whats keeping me going right now. I really got off the subject : / Barbara my kiddos are 17 yr girl, boys 22, & 23.The boys both moved to Dallas after graduating and I guess loving it. Moms not so much, 5 1/2 hrs away is to far. I am missing them a lot right now, so thats not helping my spirits. They really dont know whats going on with me. Their lives are so busy working and doing what 22 & 23 yr olds do, I really dont even hear from them much. I guess thats not helping either lol. I start feeling like they dont care . Are my kids the only ones that do not call mom much? It makes me so sad... OK off that
My point was I don't ant it to go that way.
Im gonna have to start cutting these shorter lol. It has taken me like hr 1/2 to type this. I used to be an A+ speller, now I cant remember a lot of them. I don't like leaving them misspelled so I keep going until its right. Then I look at my sentence an the words are not in place right, or make sense so i retype it. I may quit worrying about all that, so t may be a real mess soon : ) I think I repeat things a lot so forgive me.
Should I see a neurologist for my head prob.?
I did get generic I believe ?? It says hydroxychloroquine, & taking 2 a day for what 10 days now. I am sick to my stomach, but I starting getting that way some about a mth ago when i was lying down. So who knows the new med, or just getting worse anyway. May be the latter, like everything else.
I just want to say to . I am so sorry for any pain,or sadness that anyone is going through. I hope I can get my mind redirected back to the positive thinking like a lot of you. That def helps me when I read that. Prayers going up for everyone tonight
Lisa : )

AP91172
New Member


Date Joined Aug 2014
Total Posts : 4
   Posted 9/2/2014 12:58 AM (GMT -6)   
Oh, I went to the Lupus Foundation of America List of 15 Signs & Symptoms from Lupus.org I have 7 of the list

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/2/2014 8:41 PM (GMT -6)   
It sounds like you have a plan to get answers. Don't stop until they are answered.

My nieces are in the same age range and I rarely hear from them either. They are too wrapped up in their new independence to talk to their old auntie.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))
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