So, after speaking with my rhuemy I was told that people with "inflammatory arthritis"(general term for auto-immune) usually do have fibro as well. I learned that from all of you. :) He then told me I could take my lyrica and plaquenil together. So I've been taking pristiq,plaquenil,lyrica and volatren. I have to say, finally the pain is coming under some control! Yeah! Now I'm left with a crushing fatigue! Mabey that's the fibro, I don't know. I just can't seem to get that under control. Also, even a little exercise (like just walking the dog in my neighborhool) causes me pain and stiffness. So frustrating!
I also find that when I'm in the sun, I don't have pain afterward, but extreme fatigue. Does anyone else feel like that?
"Sometimes you're the windshield, sometimes you're the bug"
I have fibro which was diagnosied first with me. I have what the call lupus arthritis (osteoarthritis). I seem to suffer a lot with joint pain and extereme fagtiue, special after sun exspoure. I get an immediate headache from sun exspoure. So I stay out of the sun on the most part. I cover my body with sun clothing and a sun hat but it doesn’t matter I still get the effects.
I asked my Rheumie when will I get relief from the fatigue, and he told me when the swelling subsides. I have not experienced a rash, but I do get wiped out from the sun. Extreme fatigue.
I go back to my Rheumie for my 3 month check since starting the plaquenil. I don't feel any improvement in swelling.
The sun seems to be my worst enemy. It causes such fatigue and aching makes me feel like crawling into bed and staying there. I avoid it at all costs. When I was on the Plaquinil it seemed to help with the muscle pain but not at all with swelling. I'm off of it now on Ultram and have felt better than I have in a long long time. But he also has me on prednisone to get me off of my nose spray.
The fatigue is a symptom of fibro, lupus, and a side affect of your medicines, so you are getting it from 3 places. The number one rule most people with lupus learn is that sushine makes it worse, and so does fluorescent light. It affects everyone differently though. Some get very severe reactions, some get fatigue, some get many things in betweeen that. It can even be different symptoms each time you go into the sun. So you're not alone. Sometimes it's the heat that gets to us too. In extreme heat, it's like my body shuts down. I can barely move or think or function.
Deenie You confused me. Osteoarthritis isn't called lupus arthritis. The arthritis that comes with lupus can be either osteo or rheumatoid arthritis. In your case, do you think it's the sun that gives you the symptoms, or the heat?
Dewing3569 said:
Rosie
I have fibro which was diagnosied first with me. I have what the call lupus arthritis (osteoarthritis). I seem to suffer a lot with joint pain and extereme fagtiue, special after sun exspoure. I get an immediate headache from sun exspoure. So I stay out of the sun on the most part. I cover my body with sun clothing and a sun hat but it doesn't matter I still get the effects.
Rosie, No doubt about it, I'm convinced though the meds bring relief, often the extremem fatigue follows. I've experimented taking it before I take a nap or before I go to bed...so I sleep it off.
That has helped me.
The sun and heat.....Well both are a no no for me. I am indoor all summer and cannot get in direct sunlight and the heat makes me want to pass out. I feel the best in the spring and fall. But I am OK in the winter if I stay moderately warm.
I think with time, we all learn to cope ...with what is best for us.
My rheumy Dr gives me folic acid 3mg daily. I have hemolytic anemia so the folic makes extra red blood cells. I found I was less fatigued. This is a high dose and is a script. Talk to Dr,it might help
Faye - that's one of the most sensible things anyone can say - we all learn to cope with what is best for us
It's really tough to know what to say to someone with Lupus because everyone suffers in a different way, in that respect it's so very different from other conditions
Not enough is known about Lupus amongst the medical profession (at least that I have encountered) a lot of the stuff that I've been told has been so wishy washy, I've had to find my own coping mechanisms for a lot of it
Faye said:
Rosie, No doubt about it, I'm convinced though the meds bring relief, often the extremem fatigue follows. I've experimented taking it before I take a nap or before I go to bed...so I sleep it off.
That has helped me.
The sun and heat.....Well both are a no no for me. I am indoor all summer and cannot get in direct sunlight and the heat makes me want to pass out. I feel the best in the spring and fall. But I am OK in the winter if I stay moderately warm.
I think with time, we all learn to cope ...with what is best for us.
inflammatory arthritis comes with both Lupus and fibro.
Rosie the fatigue will come from the fibro but if your Joints are swollen this can slow you down besides because i have cervical spondylosis also known as osteoarthritis and when my joints are swollen it makes my fatigue really low and my body slow in functioning.
If the arthritis is affecting your legs alot besides hip joints etc...just that small walk can really hurt and tell on you....when it's cool here i go outside when there's no sun and expose my knees, legs as much as i can without looking indescent as i've noticed the coolness takes the heat away slowly.
Rosie you need to keep as much out of the although it's not affecting you with pain..it's still affects you mentally by draining you and sometimes it can be through dehydration although you don't feel like it.
We're in a no win situation with our symptoms but must help them the best we can.
I have cervical spondylosis which is called Osteoarthritis but Deenie says she as Lupus arthritis which is correct...and this Link may show the definition which your saying between osteo or rheumatoid arthritis....as there is a so called Lupus arthritis.lol
Sheila i've never known so many complications with one disease and that's before we hit fibro.
Hugs Terri xxx
Sheila W. said:
Deenie You confused me. Osteoarthritis isn't called lupus arthritis. The arthritis that comes with lupus can be either osteo or rheumatoid arthritis. In your case, do you think it's the sun that gives you the symptoms, or the heat?
Dewing3569 said:
Rosie
I have fibro which was diagnosied first with me. I have what the call lupus arthritis (osteoarthritis). I seem to suffer a lot with joint pain and extereme fagtiue, special after sun exspoure. I get an immediate headache from sun exspoure. So I stay out of the sun on the most part. I cover my body with sun clothing and a sun hat but it doesn't matter I still get the effects.
My doctor calls is lupus Arthritis! I guess they have know said that both types of arthritis accompany lupus so they have decided to call it that! I am only repeating what my doctor told me. Here are a few site on the subject matter:
The sun and the heat both bother me! In warm conditions my body will swell. In sun conditions I get sick such as a rash, headache, extreme fagtiue and an over all feeling of not feeling so good.
Deenie
Tez_20 said:
Hi Sheila,
I have cervical spondylosis which is called Osteoarthritis but Deenie says she as Lupus arthritis which is correct...and this Link may show the definition which your saying between osteo or rheumatoid arthritis....as there is a so called Lupus arthritis.lol
Sheila i've never known so many complications with one disease and that's before we hit fibro.
Hugs Terri xxx
Sheila W. said:
Deenie You confused me. Osteoarthritis isn't called lupus arthritis. The arthritis that comes with lupus can be either osteo or rheumatoid arthritis. In your case, do you think it's the sun that gives you the symptoms, or the heat?
Dewing3569 said:
Rosie
I have fibro which was diagnosied first with me. I have what the call lupus arthritis (osteoarthritis). I seem to suffer a lot with joint pain and extereme fagtiue, special after sun exspoure. I get an immediate headache from sun exspoure. So I stay out of the sun on the most part. I cover my body with sun clothing and a sun hat but it doesn't matter I still get the effects.
OIC Deenie, (and Terri), thanks for the info. When I read that first link you posted, it suits more of what I have been told, that a person with lupus can have either rheumatoid or osteoarthritis. Osteo is not the crippling one. I guess I just read your message wrong. I thought you were saying that all osteoarthritis is lupus related. Sorry!!! I LOVE learning new things. It's frustrating too when different doctors know different amounts of information, so every Dr. might tell us something different. I am the same as you in the sun and heat, but it's been so many years since I got the rash because I refuse to stay out that long anymore.
Take care,
Sheila
Dewing3569 said:
Shelia
My doctor calls is lupus Arthritis! I guess they have know said that both types of arthritis accompany lupus so they have decided to call it that! I am only repeating what my doctor told me. Here are a few site on the subject matter:
The sun and the heat both bother me! In warm conditions my body will swell. In sun conditions I get sick such as a rash, headache, extreme fagtiue and an over all feeling of not feeling so good.
I'm like yourself avoid the sun...it murders my skin within minutes and being dark haired does'nt help one bit but there is such alot to just one disease and it's very rare it loves giving we a break.
It's hard to comment about the sun. I don't have a choice but to be in it every day. I think I am allergic to the sun block I got last time, because I didn't seem to do as well with the new one. I get pretty tired, but usually only after someone stresses me out pretty badly. I have to use strong antihistamine to sleep at all at night, and when I take too much, I sleep very late. It is a balancing thing.
Being in the sun all the time won't help one bit even though you have no choice and although i use the sunbloke if i go out with my hubby when it's warm here...i always find that it's never enough and i really believe whatever the best you go to with the disease to help issues and hope you get relief...nothing is'nt good enough something still manages to trigger.
Although your on the antihistamine just becareful and try to get a good balance with it, with your other meds as your doing so well in the other thread with losing weight etc. xxx RJQ said:
It's hard to comment about the sun. I don't have a choice but to be in it every day. I think I am allergic to the sun block I got last time, because I didn't seem to do as well with the new one. I get pretty tired, but usually only after someone stresses me out pretty badly. I have to use strong antihistamine to sleep at all at night, and when I take too much, I sleep very late. It is a balancing thing.
Hilarious--Sometimes windshield and sometimes bug! Love it! Stealing it--will quote you! And I have people tell me I take alot of medicine! (I think they say that to all of us.) Sorry about the fatigue. I go thru slumps of it regularly. When I have good energy, I try to do the most important and pressing things--prioritize and work quickly--cause when you hit the wall--it's over. When I don't have good energy, I tend to do whatever the heck I want or absolutely have to. With my poor little dog who likes to walk everyday despite a huge yard and neighbor dogs, I tend to take him to one of the local doggie parks. We have two in town here in grand old Pekin, Illinois. One is wide open clearings with stands of trees. The other is fenced and he can't get too far. But that being said he is old and slow and got his center of gravity hanging kinda low. So, it's not a bad effort if I'm not all pep and step. You just have to be careful about bigger and aggressive dogs if there are other people there. The fenced in one has chairs about 20 ft. in and you can plop down and just watch them go crazy. The fenced one also has big dog area and small dog area with weight limits. Neither require leashes once inside which helps not pulling on your arm or untangling leash. But you got to keep your animal under control. So, creative compensations and solutions. My best friend--healthy besides depression and anxiety--has alot of fatigue and hires out or trades for tasks she can't or doesn't want to do. And she has an ailing spouse along with accounting job/tax preparation--yuck! She pays a niece to take trash cans to curb once a week, someone to mow and shovel snow, someone to clean once a week, etc. But I'm too cheap to hire too many things out. But a niece $5 to push can to curb--there's days I'd consider it. I have hired some cleaning and yard work out this year which was a first--only a few times. I just couldn't do it all. The whole sun thing kills me. That's one of the things that I get torqued about--is how the disease changes who you are. I used to be a sun worshipper before this and never wore socks except with sneakers for work or workouts and in the dead of winter. Now I'm pasty or I flare and have fatigue after exposure for too long. And I am going to have to wear the stinkin socks more cause the Raynauds is worse. Gosh I ramble. Sorry. Hope it helps. When we don't have all the resources we need, energy, money, tools, whatever--it forces us or are friends for us to be more creative. That's one thing we do get from this. Rest up, girl. The whole arthritis categorization is bizarre to me, a nurse. I was taught that there were 2 arthritis catagories--rheumatoid (RA)/autoimmune which is body attacking itself and Osteoarthritis which is "wear and tear"--some people say with aging and use, but after about 30 most folks have degenerative joints in various places. Both can be inflammatory--so, that is a strange term to me. There are varying degrees of course. You know when my fatigue is that extreme, I usually say--"I'm too tired to breathe." It seems to get the point across. Hang in there! Hugs, Karla