View Full Version : can't take the pain

07-23-2004, 08:53 AM
Hi! My name Is Kathleen. My Grandmother died from lupus 16 yrs ago. She was very sick for a long time and no one knew why until she died. My Mom and I were tested and we both were positive. I was doing OK until 3 years ago. I am 40yrs old, single and have 3 children. I have a full time job but I can not function. The pain is so bad I can not concentrate or sit up. My doctor gave me loracet for a few weeks. It worked great. I only needed to take one a day to get thru work. He will not give a prescription for more and told me to take 4 aleeve a day. They do not work. I did not abuse my prescription because it said I could take them every 6 hours and I only took one. I work on commission and my salary is down to $200 per week. I am so frustrated. I used to work two and three jobs to support my family and now I can't because of the pain and I am so tired. I don't recieve child support for two of my children(long story). So things are really hard right now. I have ventricular tachycardia, fibromayalgia,Migrains, pain from head to toe, hairloss, swelling,my teeth are breaking off, I have weight gain from prednisone,arthritis. My medicine is so expensive and I do not have insurance. I can't visit the doctor any more because I can't afford it. I am at my wits end. I have aged 10 years in a matter of months. I need advise. I know there are so many people with lupus, I was strong for so long but I am not any more. I dont think I can make it another day. Any advise would be great! I just need to get past the pain so I can take care of my family. Thank you Kathleen

07-23-2004, 12:21 PM
Hi Kathleen. I am new to this board, but have been ill for a long time. I also know what it is like to deal with pain. I have talked to some Lupus patients who have severe pain and some don't seem to have as much, some have more fatigue. I am lucky enough to have both pain and fatigue. I take ultram for pain and it really works for me. It is supposed to be non-addictive so maybe your physician would consider it. The thing is, no person should have to live with chronic pain. In fact, the American Medical Association are beginning to look at it as patient abuse to undertreat pain. Studies show that patients with REAL pain do not abuse. So, if your doctor will not help you, you may want to see another physician. Bottom line, you cannot live with such severe pain. I am sure you have thought of applying for social security disability. It just takes a few months to get and you have no income while you are waiting. I hope you will continue to stay on the board and vent when you need to. Maxine

07-26-2004, 10:35 AM
Thank you for your advise. I will talk to my Dr immediately about ultram.
Thank you so much. I can make it thru this, I'm tough. Just need a little help now and then. Thank you again.

07-27-2004, 08:58 AM
Hi Kathleen;
I second everything that Maxine said..espeically about seeking out another doctor who will treat your symptoms. May I suggest that you seek out a rheumatologist, they are the most knowledgeable doctots with reference to Lupus. There are many different pain medications used for Lupus patients and it would be in your benefit to find a doctor who is familiar with the disease so that you can be treated properly.
Yes...you will get through this!! You are NOT ALONE!!
You stated that you are not recieving child support for two of your children. Are they eligible for TANF?? (previously known as AFDC). At the very least, they (and you) might be eligilble for medi-cal, especially now that your income has decreased so drastically. Do you have an order for child support for those children?? If so, did you know that the District Attorney's office/child support division will enforce (meaning, locate, order and collect child support from the absent parent as well as back child support) your order for you even if you are not receiving TANF??
Let us know if we can help you in any way...we are here to offer you support and comfort. Remember, you are not alone!!
Peace and Blessings

07-29-2004, 12:01 AM
Kathleen, just wanted to wish you well with everything you are going through. I am not working currently, due to kidney problems, but am fortunate to have a very hard-working husband to support me, as well as a bit of disability insurance through my previous employer.

I agree with Saysusie - pain is manageable in most cases, and there are even some clinics that specialize only in pain management. Also, if you have any kids under 5, you might consider your local WIC program to help out during this time of financial troubles.

Thinking of you and wishing you the best.


07-29-2004, 08:39 AM
Hi! Missy
Thank you so much. My kids are 19, 16, and 6.
I have a question. I have 2+ blood in my urine since Oct 2003. The Dr does not think this is a problem. Did the IVP and the scope. I have lower back pain all the time. Would you get a second opinion?
Thank you

08-02-2004, 09:29 AM
Kathleen - I never had an "IVP and scope," so I'm not sure what they are. And I have Type 4 Diffuse proliferative Lupus Nephritis (the worst you can have). I did have a kidney biopsy done eventually. I had blood in my urine, but has your doctor tested for protein in your urine or Creatinine clearance? These are very important to see if your kidneys are currently affected. I see a kidney specialist every two weeks, and have told him that I have lower back pain, but he does not think it's kidney related (I don't believe him - never had it before). It's not bad, though, and usually happens in the morning when I wake up, when I haven't gone to the bathroom in a while. Some people notice they urinate a bit more frequently and their urine might be "cloudy" with kidney problems, according to my Rheumatologist.

Hope this helps. A second opinion is never a bad idea, and a good doctor will not be offended. MY kidney doc suggested it, when he was considering putting me on Cytoxan instead of my current medication regime. Luckily, we have not had to go there yet.


08-30-2004, 10:25 PM
Hi Kathleen,

I have pain and have for some time. I would definitely suggest a Pain Clinic, they are usually situated in hospitals but you need to be referred to them and there are many methods and meds to treat your pain more specifically. Lupus pain and fibromyalgia pain is different then say, Cancer pain or something. That first med you spoke about is usually for post-operative and so forth because it really is addictive so there might be better solutions, you don't have to be abusing it at all for them to not want to give it to you long-term.

They should have at least found something else for you so I do suggest getting referred to a pain specialist and a rheumatologist. People that really know and understand your specific needs.

Good luck and we are all here for you and hope you are feeling better!

Go after that child support and look into government programs for you and your children to help you through the process. Every little bit counts.

09-11-2004, 09:44 PM
When I was first getting sick I had such vauge symptoms. All I had was pain everywhere! I kept getting infections. My kidneys werent keeping up. Otherwise I was ok. I had High sed rate and CRP. My HCT was low. I had a slightly high RH factor. All other labs where good. But I was told I have Fibromyalgia and nothing else. I stayed with my same doctor for the next 3 years and was told the rest was in my head. That even though I could barely breath it hurt so bad it had nothing to do with FM. That the asthma was also unrelated. They but me on anti depressants. And told me to see a theripist. I did thar, nothing was working. I got worse and worse. I was at my wits end. I started talking to other on a chronic pain message board. They told me it sounded like lupus. Then it clicked. I have an aunt and 2 cousins with lupus I have 3 cousins with RA and another aunt with RA. Onemore cousin with Sclaraderma. So it all run in my family, then my MD tells me lupus doesnt run in families. I was angry and in so much pain I couldnt move. My hands where red and swollen. I had hot joints. I was in pain noone should have to be in. I was only allowed 30 T3's a month. It barely touched the pain. THe rest of the time I was taking 800mg of ibruprofin 2 times plus a day. It did nothing. Md would not give me anything else. Finally they sent me to see a rhuematologist. They did a ton more tests. I waited for weeks but heard nothing. I had rashed since i was a young teen on my face, but it was kind of over looked as well. After waiting I went to a new set of doctors. They right away found that I had many thingd pointing to some autoimmune illness. I was dx'ed that day with kind of a broad name Mixed connective tissue disease. I was put on prednisone and given many other meds to get it under control. Then within a month started having heart problems. In fact it almost stopped at one point. I was so angry! Had they only checked me sooner. Not long after I then also started having seizures. For the first 4 years it seemed I was sick almost always with very few breaks in flares. There were times I wasnt sure if i was going to live through it all. But I have. Now mostly the illness is under control. I feel very lucky. I taken many meds over the years. Now I try to tazke as few as possiable. I still face issues with exhaustion. I am tired so tired. I have pain in my joints. Pretty much as part of my everyday life but nothing I can't live with. I also have migrains. But those seem to come with stress. A year after I changed MD's I got a letter from the old MD showing what my new doctors had said all my blood test were a mess. Somehow they just hadnt made there way to me. Since I have been dx'ed with lupus with kidney heat and brian imvolvement fibromyalgia and IBS. I think they are pretty much all related. My asthma has improved 10 fold with the treatment of lupus. I took shots of methotrexate for a few years but have choose to go simple and get off all the meds I can. My doctors are good to my when it comes to pain. They give me pleanty of pain meds. Whats important is to find a doctor who will listen to you and give you the treatment you deserve. Nobody should have to suffer with chronic pain. Not when there is so many kinds of pain control avilable. Don't give up. It will happen. You will get the meds you need. Maybe you could aslo think of getting disability. I am in the process myself of getting it approved. I wish you the best of luck and if you need support seems you have come to the right place. Forums like this have been of great comfort to me since the start of all this. Lots of hugs Lucy

09-16-2004, 07:47 AM
Thank you so much for the help. I still can't shake this. It's really getting aggravating. It's hard to get good medical help around here. I was accepted at our local free clinic, but I dont think this is the place for me because they dont know much about lupus. The good thing is that they will give me my meds for free. The pain is unbelievable. It is hard to get my 6 year old daughter ready for school in the morning. It takes 15 minutes just for me to brush her long hair. keeping the maintanence up on our house,yards, lawnmower repair, car repair, trimming bushes, raking, taking trash to the dump, etc.. is really getting hard. No money for a single parent to pay someone to do it. I crawled up on the roof last weekend to repair a leak before the hurricane rains hit us. It took 3 days to recover from muscle pain. How do single parents with lupus survive?
I worked a full time job plus another job in the evenings to pay bills but for the past 3 years I can barely do one job. I do not qualify for any assistance. I do get food stamps $243 per month. When I get home from work I am so tired I can barely stand up to cook dinner. Forget bath time and getting my daughter ready for bed. We do it but WOW! I feel like it's time to give up, but what about my children, my home, my everything. I dont think I can make thru work another day. I dont have the strength. I have no one to rely on. My Mom says move in with her. I cant do that. They could not handle 3 kids 3 dogs 2 cats 1 rabbit. Where would I store my furniture and belongings that I have worked so hard for 10years to acquire. I dont have much but I worked hard to have it. I would have to sell my home. And you know LUPUS ---after all that I probably would go into remission. I HATE LUPUS! Well I better get moving here at the office. I am a travel agent and hurricane Ivan has really been a problem for my clients. Thank you again for advise. Its great to get new ideas from the great people on this site.

09-16-2004, 08:34 AM
I have been where you are. Only I have had a husband the whole time, he has NEVER been any sort support. Even after getting out of hospital the first day he would be back at his 14 hour a day job. I cried. Alot during those days. I am feeling for you and think good thoughts for you. Right now EVERYTHING seems to hard to bare right now, but I swear at some point it will get better. Kids and lupus are hard to do. I know that feeling to. I do it with 5 kids myself. :!: Kids when you are healthy is insane amounts of work. Add lupus to anything and it adds ten fold. I don't know much about where you live and what supports you may get. There must be a something. Just thinking out loud here. But, would it be possible to rent your house out while you get better and go live at home for a short while. Once some of the stress is relieved you may find you come out of your flare in just a short time. Or it could take a long while. Either way the more support you can find in the meantime the better. Doing this by yourself just may further agravate your disease. Stress is the main cause of flares for me :cry: Once you pull through this you will be amazed at how well you made it through and how happy you are that it's behind you. I wish you the very best. BIG HUGGS!~ Feel Better ~Lucy