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Ever feel like just crawling in a hole???

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Posted 9/6/2007 11:23 PM (GMT 0)
Warning rant ahead...... confused

Do you ever feel like just climbing in bed, pulling the blanket over your head and never coming out??? How about when your family or friends ask you, "How are you doing?" and all you can think is screaming at them that you ache all over, have a fever, and feel like the green glob of goo that lives under the fridge??? But really all you say is "FINE." Do you ever want just refuse to leave the doctor's office until they come up with SOMETHING that will make you feel better????? As you can tell I am soooooo frustrated. I went to the doc today because I feel like awful again. I had 2 weeks of feeling pretty good and then WAM here I am again. I know all of you go through this too. My rheumy ordered labs and gave me a different Anti inflammatory that is much stronger. I wish there were labs for specific symptoms. Like....the doc would say "according to you labs it shows here your numbers are high for fatigue, fever, muscle ache and very low for energy." "Oh and it looks like your about to get a mouth sore according to your mouth labs." It seems if the labs aren't out of wack enough then they don't understand why you feel so bad. It's awful I am actually hoping that my labs for my lupus is really out of wack so that it's on paper to justify WHY I feel so AWFUL! If my labs are bad then we'll talk about what to do next. I just need to feel better. Naps aren't restoring my energy either. I wake up just as tired. I am hoping this weekend I can get some really good rest. I am just so frustrated and tired of being teary. Sorry about the rant. This is the only place I can be totally understood.

kitty

Posted 9/6/2007 11:55 PM (GMT 0)
Kitty,
I am so sorry that you are having such a terrible time right now with your pain and with feeling so awful. Sometimes just venting is helpful and I hope your "rant" is helping you feel somewhat better. I have to admit, your "Mouth Labs" and the labs for fever, fatigue and such was GREAT! These kinds of lab results would be so much more helpful for us! It is terrible that we actually have to hope we have crummy lab results to truly validate the fact that we feel really "crappy"! I hope that your new anti-inflammatory works for you and I will keep you in my prayers. The best thing you can do is try to relax a lot and sleep as much as possible. Stay strong sweetie!
Posted 9/7/2007 12:37 AM (GMT 0)
Kitty,

  ((Gentle Hugs)) I'm sorry your going through this nasty mess of a disease and symptoms. I think most of us have wanted and still do at times, to "crawl in a hole".

   Sometimes things just get so overwhelming and we need a break. I hope the new med works and you start to feel alot better soon. Please rest and take care. You are in my thoughts and prayers. Hang in there!!

                                                       Babs

Posted 9/7/2007 3:27 AM (GMT 0)
Hey Kitty,

Hang in there . . . those new antiinflams might really help. If the inflammation is under control, then you may feel way better. Trying different ones is really a good idea because we each respond to something different. I hope this one works for you.

Methatrexate helped me lose a part of the fatigue. At least it lifted a bit. I think the fatigue is worse than the pain . . . let us know how your new med works. Sometimes you can feel a difference pretty quickly.

Blessings!
Posted 9/7/2007 10:12 PM (GMT 0)

Thankyou alwaysrosie, babs and audreyann!! Thanks for the encouragement. I am hoping that my new med helps soon. The deep ache is a tiny better but nothing else yet. I just have to keep the faith that the new med will work soon. The new anti inflammatory is Nabumetone. The pharmacist said its pretty strong and better than Naproxen. Has anyone else taken it?? Sorry about the rant.... I was REALLY tired and just plain sick of it. Then I feel guilty because a lot of you are far worse than I am and here I am complaining.

kitty

Posted 9/7/2007 11:14 PM (GMT 0)
Hey kitty, I totally am with you on this. Sometimes it seems like a conspiracy of doctors against patients, ;). I took namebutone and it works really well but can be very very hard on the stomach so make sure you take it with food or something to prevent that. It is very strong, and it worked well, but for the stomach problems, I had to stop it, but I am very very sensitive to meds cuz of liver. And as for mediocre labs, I get so mad I can't even get sick right! I told my rheumie, after a half hour of listing all the new problems that I just felt like I was getting sicker and sicker and he said, "from what? what do you mean?" and I was like, " I just told you! All that stuff!" Then he starts dissecting it all and I just get confused, like, sure any one thing I could deal with but all of this, and WHY? I know what you mean, you tell them you feel awful and they look at you like you're from another planet, like what do mean? Ugh. I did notice a patch of vitiligo on my rheumies face yesterday and he is polite and patient, though I think he must think I'm really braindead or something, because I have been lately and I understand now why he is really trying so hard to help his lupus patients. He is really a sweet guy despite the fact he's a doctor, tee hee. I hope you feel better and that new drug knocks out the pain. Tizanadine worked for me too and was less hard on the stomach if you cant take that one. Ultram works well, its what I've taken for years. (((hugs)))
Posted 9/7/2007 11:46 PM (GMT 0)
Lately I feel like crawling in a hole every day, It sucks cause I know I have to keep going no matter how bad I feel or risk losing my home. I've already lost my son, he decided to go live with his father 2 months ago. He got tired of seeing his mom just laying 0n the couch, sleeping or in pain. Tired of having no dinner and no clean clothes. I hate this disease. I had two good years

practically symptom free, even my labs were normal. For a crazy second I thought the doctors were wrong and maybe I didn't have lupus. Then BAM 2 months ago it hit. The fatigue, insomnia, joint pain, forgetfulness and hair loss. Putting off calling my rheum cause I know he'll just put me on steroids and I hate taking them. Maybe I can mention some of those anit inflammatories to him. He won't even prescribe the Celebrex or Plaquenil again. When I called about the fatigue it was start the steroids, I said no so he doubled my Provigil. I have a friend who works with MS patients and told me about a new drug, Tysabri. Says the drug company may trial it for Lupus. SIGN ME UP. Hear it is like a miracle drug for patients with MS. I need a miracle.

sorry, i am rambling. health and prayers to all.

 

Posted 9/8/2007 12:05 AM (GMT 0)
Hi Kitty:

Man oh man can I relate to this post. I understand your feelings of wanting to hide away in a hole. I wish I had one too. Hang in there ((((hugs)))) I know this darn disease is so so tough on us. I take methotrexate currently. I took it in the very start of my flare in 2003 and it helped a lot. Now it's just barely handling things, of course, the MDS plays a huge part in how my meds work. Don't give up keep fighting this disease. I'll be praying for you and hoping that your new meds kick in really soon for you and you start feeling much much better.


Lots of gentle hugs,

Barbara
Posted 9/8/2007 4:50 AM (GMT 0)
Hi, Kitty. That hole you're wanting to crawl into has been my residence for the biggest part of the last 13 years! I SO know what you mean! I am So with you too, on that doctor not getting it thing. Your specific lab idea is a great one! Now I'm looking forward to a New Age Sensory Device (I haven't invented it yet, any ideas?) that allows you to simply touch the doc and they will suddenly FEEL EXACTLY the way we're telling them that we feel! Then they'd be asking US ?'s about how to do simple things like breath, eat, walk, sleep, use the bathroom normally...you get the idea! I'm talking REALITY CHECK for them!!! I did take the Nabumetone last year. Unfortunately as Marji posted, it is really hard on your stomach, etc. I started passing blood in my stool about Thanksgiving last year and didn't stop until after Christmas when on my own I stopped the med. to see if it would stop the bleeding since my rheumy (at the time) wouldn't hear of it. When I stopped the med., the bleeding stopped. Good luck with it for you though. Those meds can effect each one of us differently. That was a cute rant! I hope it made you feel better, it did me. Thanks,
Posted 9/8/2007 6:05 AM (GMT 0)
Kitty, If it doesn't work ask for Celebrex. Also demand a med to protect your stomach. I say this from experience. You may need steroids. We all hate them but they are the best available. Ask about other medication options. My rheumy says the blood work means squat. Simply put the labs rarely reflect how we feel and worse the tests can vary from minute to minute, hour to hour, day to day, etc... She said they haven't changed how they run them in 30-40 years only the measurements change. The minor changes in the ANA test are apparently not a recent development. It has been used for decades in other countries and is no more reliable than the other way. Sad to hear the only change in labs doesn't have a higher accuracy rating but heck what do we expect? After all when a disease affects mostly men they rush to find new and better tests and treatments but when it is mainly women the problem is ignored for decades even in today's world. The sad part is we are expected to advocate for ourselves and many of us lack the ability due to disease activity. I say call the rheumy until they help you. and for sarazakmom I suggest trying to find a new doctor. Simply put giving you more Provigil does nothing when your body needs rest and relief. Provigil is only effective when you are tired but there isn't a physical cause- as per my neurologist and rheumy. You need a new doctor bad. Today Plaquenil is the first line drug as it alters how our cells function- mostly ph thing. Then steroids or chemo drugs. You obviously need regular treatment. Plaquenil takes as much as 6 mo to a year for full benifits to be seen. Imuran and Mtx are stronger, more dangerous, but needed in many cases. Anti-inflammatories are a must. Simply put lupus does its' damage through inflammation. Why your rheumy won't give anti-inflamms or plaquenil is beyond me. If you have trouble with one version- name brand or a generic does not mean you will have problems with all. Many generics exist and all use different fillers and so does brand name. I hope this helps both of you. I spent from around age 14 until 27 almost 28 not being treated. I was on steroids for over a year and Imuran for about 1 1/4-1 1/2. I take plaquenil daily and am back on 5mg pred to replace Imuran. I lost my gallbladder because of lack of treatment for so long, have mild damage to my lungs, and was lucky enough to escape kidney involvement thus far. Heck I take enbrel weekly and used to be on humira. I say demand better treatment. Do not accept having the symptoms and disease ignored. That approach could kill you or at the very least allow the disease to progress and perhaps lead to organ damage.
Posted 9/8/2007 2:25 PM (GMT 0)

I am so glad that I am not the only one feeling this way!! My Rheumy said that he doesn't think my symptoms are from my Lupus. WHAT!!!! My head felt like it was going to explode. I was soooo confused. I asked him if it's not my Lupus then WHAT IS IT????? He said he would run my lupus labs to see if they are abnormal. And I told him that a few weeks ago when these symptoms were really bad my GP put me on the prednsione pack and it took away ALL my horrible symptoms. He just shook his head and said that prednisone right now wasn't appropriate. And he put me on the new anti inflammatory. He isn't explaining things well. Maybe he just doesn't want to see another one of his poor patients have to take prednisone or something else awful. I don't know. He is a very kind man and I know that he is concerned. It's just frustrating!! My labs from a few weeks ago didn't show any liver or kidney problems so that is when he said I don't think it's your lupus. Maybe you have the flu? FOR A YEAR OFF AND ON????????? I don't think so! He agreed. Whew! So lab work done again and the new med. He did tell also that I have a lot of arthritis in my neck and back. I am now wondering if the arthritis is giving me all the symptoms if the labs come out ok. I read on the internet that Arthritis can give you fatigue, mild fever, joint pain, swelling, high white count, and a flu like feeling when it is flaring. Now why didn't the rheumy tell me that???? I wish he would teach more. Or at least tell me what else this could be. Here I am going to the oncologist for my leukocytosis and it could just be my arthritis causing it. I'm going to ask him. Because he has no idea what is causing my high white count. He keeps searching for Leukemia. The lupus and arthritis blend together when it comes to symptoms from what I read. It's hard to distinguish between the two without the labs I guess. All of this is confusing. The Namebutone starting to work on my pain. YEA!!! But I still have a low grade fever and flu feeling in the late afternoon. I'm hoping it all goes away soon. It sucks that I know for sure if I took Prednisone I would feel better. And for now I can't take it. Which is good because of the side effects. But still its like a little carrot out there that you can't reach. Unfortunately it's laces with side effects.

Thankyou everyone for all your support!! You are all awsome!!! I've made a list of all the meds that everyone has listed and l'm going to look them up and see if any of them would help me. THANKYOU.

Kitty

Posted 9/8/2007 4:02 PM (GMT 0)
KItty, I'm sorry to hear about all you have been going through. It is really frustrating when docs go strictly by your labs in how they treat you. Sometimes when I am feeling aweful, my lans don't show much, but other times they are out of whack, so I just never know how they will turn out. My old rheumy treated me based on labs alone and it was so frustrating because I just kept getting sicker and sicker and she wouldn't put me on anything more than plaquenil and tramadol. My new rheumy put me on prednisone and I was like you and got a huge amount of relief from my symptoms and could function so much better. It sounds like your GP is treating you better than your rheumy. Do your think you could go back to your GP if you aren't doing better after a while? Maybe your labs will show something that will make your rheumy decide to try some prednisone or something else. Hang in there and I hope the new anti-inflammatory keeps working for you. Take care ((((Hugs))))
Posted 9/9/2007 4:48 PM (GMT 0)
Hi Kitty--
I was LOL when I read about your doc saying that your symptoms weren't from lupus. I get that all the time. They just don't want to take the responsibility for treating them OR they don't want to brush them under the rug until they know for sure it isn't from something else OR they think you will benefit from mind over matter, like then you will think you aren't as sick, but the problem is you then worry what other ten thousand diseases you have!

On the neck arthritis stuff, I've had two surgeries and now have 50% compression of my spinal cord in my neck and they won't put a rod in until I have some degree of paralysis. I have osteoarthritis throughout my back. There is actually a way to make it heal in some cases, through traction. Traction worked a lot to relieve my pain and to heal my lower back. Avoid surgery unless your arms are numb or something, but avoid it as long as possible, because you will end up with localized pain in your neck where it was done and there is nothing surgically they can do to fix it. Actually, getting the plate and four screws in my neck wasn't so bad and helped with the numbness, though its back now in my left arm, but when they cut the back of my neck from skull to shoulders through all those thick muscles, they really messed me up. Traction and pain management are good. Now i can't even do traction anymore and that took the pain away well.

Also, flu-like symptoms and nausea can be signs that you are in extreme pain, pain so bad you don't acknowledge it. Because arthritis pain and arthritis usually comes on slowly over years, you don't notice the pain, then it becomes annoying so you block it out and get really good at it. But at some point you can feel nauseaus from extreme pain that you block. Pain management and getting out of pain helps. I actually feel less nauseas on my pain medicine than I do without it, though the medicine is supposed to increase nausea, and I go days without taking any so I know its not an addiction thing. Its just pain, when I think of my neck, I want to throw up. I know it hurts but just don't have time for it. When I took fentanyl and was completely out of pain, I couldn't tell if I had GI problems or any other problem like even cancer, the pain med was too strong, and I had a polyp and so I learned that its good not to take as much pain meds as you need to be completely out of pain sometimes.

I sure hope you don't have to have neck surgery or anything like that. Usually your sed rate goes up when arthritis is active. Mine does, but then mine is usually always active. Another good thing about arthritis, at least osteoarthritis is that it can go away if there is something else causeing it and the cause is eliminated (seocondary arthritis), so that's a good reason to go to physical therapy and pain management for a while, if need be. COX2 inhibitors made me hurt alot more for some reason, guess I'm allergic or something. Ultram worked for pain and tizanidine worked for nerve stuff and I get a 20 hydrocodone a month for bad days.

I hope you feel better and the docs can figure out what was wrong. They found an inflamed patch in my small intestine that looks like celiac or some other type of malabsortion problem recently and they suspect that is causing my nausea and constant diarrhea for the last maybe 6-10 months, so you might want to see the gi on it if you aren't digesting food or stools float or just to get their input.
Posted 9/9/2007 7:39 PM (GMT 0)
Sharon,

   I love your idea of the "New Age Sensory Device"!!! yeah

Kitty,  Nope, your not alone in this feeling sweetie! I'm glad you have gotten alot of feed-back on this topic. Hope you feel better soon. Keep us updated and take care. You are in my thoughts and prayers.

                                                               Babs

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