Hi - I'm a new member and have read so much interesting things from all of you! Thank you so much. I have had Lupus since 1997. Six months ago I quit my job and have been more tired than ever. I am peri-menopausal, have high blood pressure, lupus, anxiety, depression. When I feel good I do what I can, but this tiredness is the worst. I have joint swelling and pain, but I do have a high pain tollerance and the pain is nothing compaired to the fatigue. I feel like that melting witch in the Wizard of OZ! When I'm tired, I absolutely melt. I've had to leave the dinner table to lie down. Can hardly wait to hear from some of you!
I know where you're coming from. I had a 'bout of fatigue that started 2 years ago and it was getting increasingly worse. Revamped the diet (was a vegetarian, now I eat primarily protein), cut out sodas, drank lots of water, had sleep studies done, took sleeping pills, anti-depressants (despite not being depressed), took Plaquenil and lots of other meds and supplements. Saw a hematologist that took almost 30 vials of my blood. End result? I definitely have a lot of autoimmune problems but nothing conclusive indicating fatigue. (Translation - we're writing it off as related to your SLE, etc)No relief. Kept getting worse and worse. There were days where the most I could do was get out of bed to feed my cats and collapse on the sofa.
Miraculously, I've been feeling much better the past 6-8 weeks. Why? No clue. Wish I knew. I stopped the Plaquenil and the supplements 4-5 months ago - because I felt they weren't doing anything. Now I don't feel like running a marathon and a 40hr workweek is murder by Thursday, but I'm trudging along. Fortunately, I don't have high blood pressure but I have SLE, RA, and a bunch of other "conditions".
What I mean by all of this is that there is no cure-all for fatigue sometimes. But, try different things and see how you respond to it. Work with your doctors to see if they can offer any solutions. It's frustrating and you feel like a shadow of the person you once were. It sucks. I also got bloodwork (CBC, etc) done once-a-month to see if there was any red flags.
Hi, I am new to the message board to. My first symtoms were the same as yours. The Remotologist put me first on Celebrex and bextra 2X aday, Transozone to help me sleep which really helps me not hurt and wake up during the night. These did help with the fatique I am now on the Phenquil for the inching skin. My joints do not swell and I can generally wear my rings everyday now.
Hope this helps.
Scuba @ Ceya,
Scuba, when I first read your name I guess I didn't read close enough, I translated it as "scab girl" ! but in reading further realized you scuba dive - good girl! I'm glad your fatigue is better, let me know if it changes and how is does. You girls,
it's so nice to be incontact with others like me. Ceya, I was on Plaquenal for a year and didn't notice a difference so I stopped it. You mentioned itching...does the plaquenal help? I was having a lot of itching, but went away when I started HRT. Scuba, I have gone through bouts (sP?) of fatigue before, but nothing like this. I wonder if its because I did quit my job and no longer have small children, but I don't know. Too many questions...not enough answers. I'm not real happy with my Dr. but live in quite an isolated area and he's the only one! I'd like to go for a consult in Santa Rosa, Ca because it's close. Just don't want to waste my time and $ if I don't go to the right Doc. Thanks to both of you, Scuba and Ceya. Hope to hear more from you both, and the board.
it is great to have heard from you. I think I am on a feel sorry for myself. I have been feeling really bad. My legs and arms have been aching, hard to drive because my arms feel so weak, heavy. I keep feeling sick to my stomach, flu like symtoms, and the fatigue is starting again. The fatigue, and swollen joints is how I got dx. kinda my ana is always boarderline and just 2 mos. ago after a year the Rhem. told me he thinks it is lupus. I feel stupid. I really have a hard time knowing if I am sick, is this a flare. My skin even feels burned at times but there is no burn. I hardly make it to work. And I am not doing as well at that as I use to. When you feel really bad what doctor do you see? I am sorry to complain. I have 5 childen and a husband. I try to not to seem sick around them. Sometimes I just say I don't feel good.
Thanks For listening. Hope to hear from you soon.
Good to hear from you! How old are your children? I have two and they are both grown and out of the house. I have a very wonderful husband that is very understanding and helpful. Thank goodness! I have also had a few flu like symptoms. For me I think it may be the weather change. Although our weather is quite mild, we are on the coast and as soon as that fog and cold sets in, I feel like crap. But my body does get used to it. I've been feeling a little better, but stress really does me in....I have a grandmother (Nana) that isn't doing real well. Luckily I share responsibilities with her, but after a day with her I'm a mess! I really don't know how you work with 5 children. I recently quit my job and have no children at home. How in the world do you do it? I haven't had that burning skin sensation, but have heard of it. My ANA is high, 50.0. You said yours was borderline. What is it? You asked who I see when I feel bad...well, usually my family Dr. because I'm not real thrilled with my Rheum. How did they come to the conclusion that you have Lupus? Are they sure its not Fibromialgia or Chronic Fatigue? Do you have arthritis? Hope to hear from you soon!
What is your ANA? Are you still feeling okay? Since you quit the Plaquen. have you noticed a difference? How is your RA? Do you have any joint deformities yet, my Rheum seems to be so focused on that. I have had 2 bone scans and they are good. ( and I'm 48 years old.) When you say supplements do you mean vitamins? Do you take calcium at least? I know this whole thing REALLY sucks. In my mind I feel 30, and want to do all of these things that I really enjoy, and it never works out! Hope to hear from you.
great to hear from you. My children are 16, 15, 13, 11, and 6.Two oldest are girls, the three younger are boys. My husband has been great although he was in a head on accident 2 years ago in Dec. going to work. he has had one surgery on his neck and now he is to have another surgery on his lower back on 11-11-02. I am quit worried that I will become worse and have all the responsiblities by myself.
Well my dx is complicated. When I first got sick my family doctor thought it was viral. My joints were swollen, flu like symtoms, rash,fever, ect. When I continued to stay this way he sent me to the rhem. He was relly great. He ran alot more bloodwork, no rh, but I had a high parvo virus b 19. He said for some it can last a long time. My ana has been borderline. but he said the treatment for lupus was the same, bextra, transadone, zolof, and levbid (irratable bowel) med. Now he feels strongly that since I have continued to be sick for a year it is lupus. and he added the plenquil to the list. (haven't notice any changes yet) I guess he ruled out fibermialga (spelling?) due to my joints. The RH factors were negative in the bloodwork. I do not remeber my ana #.
I think being able to stay home might be great every morning I wish I could just stay in bed and sleep all day but I don't want to use my leave if I can help it.
I am a social worker for a school system I have about 9 schools. I feel guilty some times because it is so hard somedays to go and do home visits, but so far I have a great boss. The weather hear has also been rainy and cold for us 61 degrees is cold to us I to live near the coast, Charleston SC.
My children ask me often how I am doing I alway say ok. They seem concerned about me, and they think I am keeping something from them but really how do you explain this.
I just tell them that I just don't feel well probably because of what is wrong with me. I do not understand let alone try and explain this. I never know from one day til the next what I will feel like, is this lupus or something else? The doctor says I am functional. Sometimes I wonder?
I am sorry you are having problems, I understand how you feel about feeling 30 and unable to accomplish things you want. My boys wanted me to go and play baseball outside. I hurt to bad to do that and I hate this. Just tring to clean house is a task in its self. My kids help alot but there are alot of things I need to do and it just builds up. But I usually try and tackel it any why.
My mother lives next door, she also had back surgery and she has ms. So I feel like sometimes that I really just fade in the back ground. They have visible problems. Mine? How do you keep it together. I do not like to complain. I try to put on a brave front. I guess being a social worker I constantly listen to others and there problems, even the people in my church come to me. You know even when I slip in that the doctor thinks I have lupus no one seems to remember nor do they mention the word lupus. I had to have a hystoretomy this summer, in bed 6 weeks, I cried for 3. I wanted to have one more baby. I do talk to a co worker friend. What do you do? I think the message board will help. I promise I do not complain or feel sorry for my self like this I have just been feeling that I am alone with how bad I feel. But I am so tired.Thanks so much for listening to me you are a God send. Soon I will be back to my positive self. I look forward to hearing from you!!!
How do I hold it together? Not very well! Please, please, complain to me all you want! I totally understand. I guess its good that your children aren't babies, but with your husbands problems and your mom....you certainley have your plate full. You know what was strange? Your mom has MS? It seems that MS and Lupus are rampent in certain areas. I was talking to a friend of mine that has MS. She lives on a small culdesac and she has one other neighbor that has MS and another that has Lupus. Plus...this is weird...my friend across the street from me just found out she has MS! I know no one knows what causes Lupus, but I wonder if any portion of it may be environmental. I know it's wonderful to use the board to post because you get more of the whole picture. But seems like you and I may have a real supportive team going. Kim
[This message has been edited by moderator2 (edited 12-01-2002).]
Thanks for telling me that I did not bother you. I was worried that you may not want to hear my problems and not write. I feel the same way. I am wondering about areas to. a person down the street from me had something in wrong that involved her blood, I really do not know if they found anything or not. There is another lady that lives further down the street that also has ms. and a man that is about 7 miles away recently died from ms. Luckily my mother's is the slow kind.
My two daughters have not felt well. I worry that the oldest has a few suttle symptoms. The peditrican can't find anything. My oldest daughter had mono a bad case about a year and a half ago, I had a bad case as a teenager and I do not think I ever got over it. I think sometimes that there are virus's that do more than the doctors know. Like me with the parvo virus, never heard of it and most docs haven't either. It generally goes away with in a few weeks. Not mine.
I hope you are feeling a little better. I will write to you soon. I continue to check the board to see if you have written. Thanks again for listening.
Ceya and all.....
I have not been on the boards for quite a while, but came on again to check on info about a new problem I'm having. Your topic caught my eye. I have several autoimmune dxs. and one of the meds I was prescribed was plaquenil. The main reason for taking this is to help stop or slow down the progression of the disease, not mainly to eliminate symptoms. It took about SIX months for me, but I did see a decrease in my knee pain and my fatigue. I don't really know if it's helped slow the progression or not, but that's mainly why I plan to continue it. One thing I stumbled on for the fatigue though is Wellbutrin. I am a smoker and one of the diseases I have is Reynaud's, along with vein blockage in my hands (can't remember the name??). Anyway, I attempted to quit smoking and it didn't work (almost.....) so I quit the Wellbutrin. I told my Rheumy that I really missed it cause it helped my energy level increase a lot. He said, if it helps, why not keep taking it even if I'm not trying to quit smoking. I know, I hate being on so many drugs too. I've been fighting being put on prednesone etc., but in this case, it helped so much that I feel it's worth it. I only take one/day, instead of the two/day that you take when you're trying to quit smoking. One seems to give me enough of a boost...............
I hope you don't mind, but I have to voice my opinion about your overall situation. Working full time with 5 children, a sick mother, a recovering husband would put everyone on overload energywise and with their stress levels. With your dxs., I'm surprised you can function at all!!!!! Also, overdoing and stress can make your own symptoms skyrocket and most likely speeds up the progression too. Our diseases may be invisible to others, but that doesn't make it any less real. You need to take care of yourself too!!!! How long will you be able to help everyone else if you collapse???
Hi Ann it is great to meet you. Thank you for your comments. I try to reduce the sress by tring to deal with things one at a time. But it does get hard. I feel like my complaints just go unheard anyway. So I have turned to the message board for support and to complain. This illness is new to me. I just can't seem to accept the fact that the symtoms vary. I never know from one day to the next what I am going to feel like. And if I get down what are my children, husband to do and then I kinda resent being the one to handel most stuff. But I realize I have to. Thanks for listening. Can ya'll tell me what to expect as time goes on. How do you know when you are sick and when this is a flare. I hate having to run to the doctor. And not really having anything to treat. And when you call the rhem. verse family doctor. or does it matter? Thanks again. Great to hear from you.
Hi my name is Robin from california!! I was just recently diagnosed with mixed connective tissue disorder stemming from lupus. I was so fatigued that I could not get up it seemed for days..until,,,,my internal med dr put me on CYTOMEL which is a thyroid med...it has given me lots of energy i need...it is my wonder drug for my fatigue. I am 42 and had a major stroke at 39 which took me the last two years to recover from. They had no idea what caused the stroke for my scans and all were normal...now it is being linked to my lupus. But ask your doc for some CYTOMEL i promise it is the best thing that helped me so far...and to top it off it helps me to lose weight that i desperately need to lose to help with the pain. Take care email me if ya want..God bless,,,Robin
I find that massive doses of vitamin C do more for fatigue than most anything else. I started out by eating oranges and oranges and oranges until I thought I would die from some orange overdose related weird ball side effect LOL.. However I got smart and started taking vitamin C tabs. I started out taking double the recommended dosage, and continued increasing it until I was at 8000 mgs a day. (16 tablets which I just let dissolve in water, and then drink it like orange juice)
Learning how to say "no" was also a great help. I was (and still tend to be) the kind of person who always carries her share of the load, and was always available to help my friends. However, I have learned to pace myself, and if I feel too tired to do something, I just say no. I often babysit for my daughter for example, so she can keep those costs down, but have told her to always have a back up sitter available. That way if I wake up and realize I don't have the strength to mind the little ones that day, I can decline to do so without feeling like I have left her in the lurch. It is a system that works well for me, and for those who are a part of my life.
Finding your balance is difficult when you are diagnosed with a disease that can be as devestating as lupus. Start keeping a record of the things you find really taxing physically, and then look at ways to modify those activities so you can still take part and be "productive" without totally exhausting yourself.
I hope I don't sound too "preachy". I've had SLE for about 11 or 12 years now, and have learned a lot over those years. Sometimes I forget that other people may not have the same outside factors in their life that allow them to really take care of themselves. I truly don't know how I would cope if I had to still work at full time employment. I was fortunate enough to have an insurance policy to cut in when I became too ill to work for example...
Anyway, I hope that vitamin C will give you a bit more energy and that you will be able to enjoy things like brushing your little ones' hair without having to deal with unreasonable levels of pain or distress.