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Old 01-02-2008, 08:34 PM   #1
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hopeless and aggravated

I really just need to vent. I feel as if Doctors in the ER don't understand me.

I also feel like I'm slowly dying but they can't find anything wrong besides the fact that I have lupus.

My head hurts daily. I'm talking daily migraines. They are so frequent that I feel like I'm gonna explode.

My head and ears feel so much pressure and I can't get relief.

I have zero energy and soooo weak. I have tried plaquenil and could not tolerate it due to side effect (very constipated).

I have the strangest symptoms that come and go but my costochondritis, fatigue, migraines, and mouth sores seem to be the ones that stick around the most.

If I were another person I would think I"m a hipochondriac or just wanting attention. The is always something wrong with me. I couldn't tell you three days that I have felt good in the last four months.

Why do I feel this way? I'll go to the ER for constant peeing and aches and they can't find anything wrong. I went today with chest pain and so much pressure in my head that I felt like I could explode. My arms tingle and feel numb. You know what they told me.........that I have........Anxiety! That makes me furious. I do have some anxiety due to being sick all the time. However, is is not the cause of my problems..

I am not a hypochondriac but i know that is what i am percieved as.
Why doesn't anyone understand that I feel like crap everyday and hurt and I am not making it up. No one accused me of making it up but the ER, just gives me looks. I can tell what they are thinking.

Why does this disease make you feel like you are slowly dying but they can't find anything wrong. I am scheduled for an MRI but until then I will be suffering.

Nothing helps. I am so sensitive to medicine and I can't find one that helps, besides prednisone. I 'm sure the plaquenil would help if I could tolerate it.

Sorry this is so random and scatterbrained but I just needed to get this off my chest.

 
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Old 01-03-2008, 05:54 AM   #2
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Re: hopeless and aggravated

Sachs, Good morning! I know you're totally frustrated, so you many not jump with joy to see more questions! I had much the same (are we somehow related? ), so I'm curious if you've considered some things, such as---

First, do you have a good rheumatologist or GP? I ask because ER doctors are better at trauma & emergencies, which is why society NEEDS them, but also why people with autoimmunes can come up short, I bet.

And are you 100% SURE Plaquenil was the only possible cause of constipation? How long did it last? I ask because, mixed in with 2 decades of irritable bowel, I had two "opposite episodes" of severe constipation.

Ironically, those were the two GI episodes that could have caused me the most harm. Years afterwards, my new rheumie was disgusted that no one had considered vasculitis. (Past GI tests had ruled out blockages, narrowing, inflammatory bowel diseases, etc.) Have you seen a gastroenterologist? Been tested to rule out the more common problems?

At the time you tried Plaquenil, were you on any other meds/supplements? How long did you take Plaquenil? (FYI, it can take up to 4 months to reach full effect.) Were you ALREADY in a deep flare when you started? And did you take generic hydroxychloroquine, or brand-name Plaquenil? (Some people do better on the brand-name Plaquenil, for rash reasons, but I'm not sure about GI reasons, though.)

Like you, I had migraines (but not daily---you must be wild with those ). And the arm tingling/numbness, GI problems, cystitis (urinary frequency, urgency & pain), fatigue, hair/weight loss, anemia, nonscarring torso/arm rashes, sciatica, mid-back pain, joint pain, etc. Since starting Plaquenil, I went down very quickly to just 2 recurring problems: fatigue & pain. That's how much it's helped, that & rigorous SUN AVOIDANCE.

And were you tested for antiphospholipid syndrome? There's a sticky post (permanent info post) at the top of the thread list with good info. It's a blood clotting disorder that can bring on big headaches.

I really hope you can sit down with a doctor soon and re-evaluate everything. FYI, I know how it feels to be called a hypochondiac. But here we know you're NOT, no way, no how. I hope you post more when you can. Sending my best wishes & hopes that you get better help SOON! Sincerely, Vee And P.S.: good luck with your MRI. Let us know how it goes, OK?

 
Old 01-03-2008, 10:44 AM   #3
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Re: hopeless and aggravated

Hi,

I'm so sorry you have had such difficult experiences with the ER. Vee is so correct when she stated that ER's are better for traumas. I had a different issue (not SLE related) last year and could get no assistance from the ER doctors except temporary pain managment (I was having a malfunctioning gall bladder that went un-diagnosed for two months along with an IBS flare). It got to the point where I felt like they were thinkning I was going there just to get Demerol - that I was an addict.

I also have gone through painful bouts with migraines and have been on a migraine preventative for a few years. I kept going to to the ER and finally went to a Neurologist.

I hope you get the help you need and find some relief soon. Vee brought up so many good questions. I hope you can give the Plaquenil another chance. I had to switch to the name brand due to rashes and itching. However, after 4 months I felt so much better.

Please let us know how the MRI went and how your feeling. Best wishes to you...

 
Old 01-09-2008, 05:36 PM   #4
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Re: hopeless and aggravated

Thanks for all of your support guys it means so much.
It is so strange how we are all so much alike.

I have had many things happen that I haven't listed!!!!!!! Boy do we stay busy with the Doctors. I have been tested for all of those things such as the blood clotting one. It was negative. I"ve had cat scans too. My rheumatologist does testing every six months. However she doesn't repeat some blood tests that I have already had. Certain ones she does like CBC, BMP, and such. I have seen a urologist, GI Doctor, and neruologist. I have seen an allergist also. Next I am going to an ENT and a cardiologist. Oh yea two years ago I too had a non function gallbladder and tested positive for H Pylori. Needless to say those were treated as well. Actually my gallbladder was removed. I have cysts of my ovaries and that is why I was on Birth controll. That is just pathetic. I will have to say this is the third day without a headache in almost 3 or 4 months. I have no idea what put an end to that vicious cycle. What's funny is that they have stopped right before I'm about to get my MRI. I did get off Birth Control Yasmine. It has been out of my system for almost a month now. I had one day of a medrol does pack. I don''t know why they have just stopped but I 'm not complaining. As far as the plaquenil I didn't start anything new and had constipation the entire time on plaquenil. When I got off plaquenil my constipation stopped. I have tried plaquenil twice and it messes with my hair and my bowls. Once I took it two weeks and once for a month. I had to take laxitives. Then when I get off of it those things stop. That lead me to believe it was the drug. I had the generic form of it.

If something comes back on my MRI (like lupus in my CNS) and they offer me steroids or methotrexate I will try plaquenil again (God Willing). It is so hard for me to take a medicine everyday because I already take more than I'd like. I feel like I haver to take meds because I am taking meds. Then I think about all the people that don;t take anything and I get so jealous of them (not literrally but you know what I mean). I hate medicine most of the time. I feel selfish a lot because I don't have organ involvement that I know of and I know things could be a lot worse. I have a mild case supposedly and can't imagine what others go through that have a worse case of it. The last three days I have felt good though like I don't have lupus. Well all except for some pain in the left side of my chest. Oh and about the chest I have Chostochondritis like pain under my collarbone areas but this chest pain is lower down and only on my left.

The reason I went to the ER is because I called my family doctor and they told me to go to the ER since I have chest pain and arm numbness. It was the PA that told me to cause my regular doctor was out that day. She really didn't know about my history or anything. Therefore I calmy went and that's when I was diagnosed with anxiety haha. I wonder why any of us would have anxiety haha?

 
Old 01-14-2008, 11:53 AM   #5
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Re: hopeless and aggravated

Hi again,

Just wanted to let you know that I had my gallbladder out in May, am on birth control for cysts, and also had costochondritis. I've been going through a 12 day flare and have had to add Alleve twice a day to my long list of medicine to help with the painful joints in my hands, fingers, wrists, and feet. I'm just glad I have a rheumatoligst now that listens and is supportive. I saw her on Friday and she did confirm that the pain I have been experiencing is not Fibromyalgia related, but Lupus related.

Hang in there! Just having doctors that believe me has made all the difference in the world with my attitude about my health issues. Also, you could try increasing your water intake and taking a fiber supplement. I take Fiber Choice because it comes in a chewable tablet and that helps a great deal. I even have a couple of prunes a day or more fruit like apples and pears.

Anyway, I hope you are feeling better and getting the help you need. Best wishes to you! Keep us posted.

 
Old 01-19-2008, 10:00 PM   #6
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Re: hopeless and aggravated

I think you should give the Plaquenil a chance, like Vee says, it takes about 4 months to get the full benefit of it. I had all your symptoms, especially the headaches. Like every day of my life for 3 yrs I had a headache, after the Plaquenil kicked in the headaches were gone, along with a lot of other symptoms. I've been on it for almost 3 years now and wouldn't be without it. I would rather take something for my bowels than put up with all those symptoms. Maybe you should give it a chance to work.

 
Old 01-20-2008, 01:26 PM   #7
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Re: hopeless and aggravated

Sach,

I completely understand your frustration. I have to say I would have lost it on them if they used the "anxiety" diagnosis on me too. Somehow, I think they must sense this and have very smartly avoided my rath and not used it (even though they might have even thought it!! lol). Do we have anxiety...Hell yes!!! Is it the source of our probelm?? Sure, maybe sometimes it does...lupus is definately aggrevated by stress. However, it is most certainly not the cause of all of our problem. Unfortunately it is a bi-product of it. I can't tell you how many days and nights I questioned my own sanity in the last 3 years. I have pushed myself through so much because I thought mind will win over body...not always though I have found out the hard way. I have been on many different medication therapies hoping for the right combination. Frankly, the part that bothers me the most is what we now consider success is my kidneys not failing and me being able to walk. I saw my dr do the tissue typing (HLA typing) form Thursday before starting my cytoxan treatment. He said I have red cell casts, white cell casts and protien in my urine now. My function is still within acceptable limits but it the cytoxan doesnt kick in pretty quick it will decline. As far as my lymph nodes, he said that has to take a back burner now till we get the organ threat under control.

I guess what I am trying to say is Lupus SUCKS!! No way around it! It hits us everywhere, mentally, physically and definately financially! I worry my autopsy will say "death by co-pay and deductible!"

The only thing you can do is take your meds, even if one or two of your meds are for the side effects of the first med (whooo...confusing) Make yourself push every day. You never know what you can do if you dont push yourself to do it. Thank God for what you have that is still working! Pray and hope that you are seeing the worst it will be and it will get better. And make sure you keep your records. Also, never go to an emergency room expecting real treatment. The emergency room is only to get you stabilized till you can see a doctor. If you think you are in danger, go ...just know that if you aren't having a heart attack or are in real crisis to the point where you will be admitted, there will be no help there. You will leave frustrated, and well...more broke! lol.

Most importantly though, know you arent alone. We all have our own challenges, and while there are some of us with milder disease and some more severe, it is all relative and what you are use to. Just because your lupus is not organ threatening does not mean does not wreck havoc on your life. If a person is use to walking around with a broken leg, you get use to it. The fact is the most pain will be at the beginning when you have not had to endure it before. That is by far the scariest time! When it gets to you, vent away!!! Whine, cry, do whatever you need to do to get through the moment! Then figure out what you can change and what you cant. Work on what you can, and find a way to deal with what you can't. However that might be for that day. It changes from day to day.

I have done all of the above. Every day is different. I know one thing though that I have really discovered about myself that I never knew. I am a fighter and a very strong person. I would not have been all that sure if you had asked me 4 years ago. Finding that part of myself has gotten me through a lot. The only thing I CAN control now is how I deal with my disease. Not the disease itself. I hit all ends of the spectrum, believe me. I have my own pity parties and have been furious too.

I don't know if my ramblings have been any help to your or not. But if nothing else, I hope you take from it that you are not alone with this and I do know how hard it is to talk to your family about it. It is really hard for people to understand how it can completely envelope your life and thoughts sometimes. It is also hard for them since there is nothing they can do for you and they know this. It is human nature to avoid things you can fix or help. Kind of like that closet in your home that is overwhelming to clean! It isnt that they don't care though.

I hope today finds you feeling better,

Erin
Dallas TX

 
Old 05-02-2008, 07:18 PM   #8
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Re: hopeless and aggravated

well Erin your message did help me as well as the other responses. I just cried when I read the kind words and encouragment. I am going to try the name brand plaquenil. I have to take the generic for a few days but then when my doctor writes the new prescription to say name brand only then I will switch. Oh and for an update. Boy are you right about the ER I knew better. However, I needed detrol La so bad that I couldn't wait till Monday. and the other time I didn't know what was wroing with all the numbness in my arms and chest pain. It did scare me.

Since then here what I have found.
1. Yasmine did make my migraines ten times worse. I still have a few a month, but not daily. I got off it and my symptoms migraines decreased. I went back on and my migraines increased. I am back off now and my headaches are down to a few a month.
Maybe Birth control pills aren't good for lupus patients or maybe yasmine didn't agree with me.
2. I got off excedrine migraine and I don't feel sick at my stomach and like I'm going crazy. I really think that pill did something bad to me. I was taking it at least once a day. Now I don't take it at all.
3. Oh and Vee since my last post I have had constipation and Irritable bowel symptoms a lot and I haven't been taking anything except synthroid. So maybe plaquenil made it worse but I"m probably going to have those symptoms anyway.


I will keep you guys updated on the brand name plaquenil because that's what I'm gonna try next. I've got to do something about these mouth sores and fatigue. I am too tired to do anything.

Last edited by sach34; 05-02-2008 at 08:33 PM.

 
Old 05-03-2008, 03:46 AM   #9
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Re: hopeless and aggravated

Sach, I just reread your very descriptive post from several months back & AGAIN want to say that I hope you try Plaquenil again. Remember, it takes 3-4 months to reach full effect. Plus, it's spring, and many lupus patients don't do as well in spring & summer. i.e., give it a chance to work & keep your optimism up as you can, OK? Wishing you much better days ahead, Vee

 
Old 05-03-2008, 07:51 PM   #10
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Re: hopeless and aggravated

For what it's worth, excedrin migraine contains a lot of caffeine too, it can make your heart race and your thoughts disorganised, and it can make you sweat a lot, does this stuff to my husband. Take care

 
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