28 replies to this topic

[Clementine]

Hello,
I have been feeling terrible. My legs hurt and I get tired so easily. I am really sick of feeling this way. What is the medication that is typically prescribed to help with this feeling? I have been against taking more meds but am to the point that I am over feeling like this. Last night, I was in bed feeling so bad that I seriously considering getting out of bed and going to get a massage. I would have paid a million trillion dollars for that massage, LOL, not really. I just checked and I don't have a fever...but I have a general feeling of unwellness all over. I often wonder if I have another overlap autoimmune disease. For those that don't know, I have no skin involvement so my dr has always led me to believe I should not have muscle aches.

Thanks,
Jennifer

[relicmom1]

Hey jennifer! I have CREST with minimal skin involvement (hands ,lower legs, face) There are MANY days I feel as if I've been run over by a mack truck ...joints and muscles just ache terribly. There are many days if I didn't have pain med, I would never make it. I just changed rheumatologist, I've only seen my new one once. I have a follow-up next month and I am going to talk with her. When I saw her the first time and told her about the pain, she didn't want to change/adjust the pain med until after I get all the labs and xrays she ordered. I hope you feel better soon !!

[lizzie]

Hi Jennifer
I feel like you describe all too frequently - complete lack of energy, ache all over, headache, feel like I am feverish but no temp, and even though feel completely exhausted have very disturbed sleep . I find it generally lasts 2-3 days and that abates. Pre SSc diagnosis ( limited with mild skin involvement) I used to think that I just kept getting some virus, but am now 99.9% convinced is the pesky SSC. I usually just take paracetemol (don't know what US equivalent is ) for the aching.
Hope you are feeling better soon.
Lizzie

[smac0719]

You are not alone. I feel that way often as well and resigned to the fact that it's just par for the course. I feel like I'm coming down with something, but never quite get it. I looked up paracetamol which is acetaminophen (Tylenol) in the US. I'll try that the next time to see if it helps.

[Karenlee]

Sorry your not feeling well Jennifer.
Maybe you should splurge and go get that massage.

Karen

[bookworm]

Hi, Jennifer and Barbara,
I, too, have that aching-all-over feeling, and what helps me is Celebrex and Prednisone. I am on 5 mg. of Prednisone, a very low dose, and my doctor says I will probably always need it. She hopes to keep the dose between 3 and 5 mg. The Celebrex is for arthritis pain and it seems to help a lot. I notice that the most when I skip it. Tylenol helps me a little, but not enough!

Mary in Texas

[peanut]

Tangie,
Something is in the air I tell you cause I feel kinda terrible today too. My rule of thumb is if it lasts more than 2 weeks maybe its worth mentioning to your doctor.

peanut

[Karenlee]

Hi Jennifer,

Are you feeling any better? I'm hoping so.

Karen

[Patty1]

Hi Tangie,
I heard some people say that Plaquenil helps with the fatigue and overall sense of feeling ill. However, I take it, and I don't achive that benifit from it. Wish I did!
Hope you feel better.
Patty

[Vee]

Hi Jen,

I remember a year ago, January. I came up with this incredible pain all over. And a severe weakness with it. I thougt maybe it was Fibromyalgia, but the doctor's disagreed. I was put on a very low dose of prednisone, and like magic in about 2 weeks, I was feeling normal again. Well, normal for me anyway. I was weened off the pred. and have not gone back on it yet. My doctor said that sometimes that little bit is enough to kick start your own production of prednisone in the body. I still have some pain issues and some days it takes me down, but not like it was a year ago. I couldn't even pull my sheets up in bed, I was that week, and it hurt that much to even use my muscles. I tried to "stick" it out, too. But after a month of that kind of pain, I was just ready to give up. I was also getting the body chills at that time, quite often, and thought I had a fever, but did not. I still get that fever feeling once in awhile, also, but not like back then.

I hope you find relief soon. Remember, you're never alone!

[Karenlee]

Hi Patty,

What benefits did you get from the Plaquenil? Did it help with stiffness?

Thanks.
Karen

[CraigR]

I frequently get the same feeling. It usually starts in the left shoulder and spreads. Sometimes it's so bad that it is painful to breathe. Stress (physical or mental) seems to precipitate it.

I find that acetaminophen helps (I can't take the NSAIDS because I take blood thinner), and a prescription pain killer (prescribed for peripheral neuropathy) is temporarily increased.

Craig

[Snowbird]

Hi all

Been there too....mine was very similar to Lizzie's....just felt awful for days on end in and out of spurts...and it lasted for many months....every time I thought, ok, enough of this, it's time to make a Doctor's appointment, well didn't it just disappear! I took tylenol as well to break the feverish feeling and it would work but then in a while it would come straight back again (just like a normal fever would) and just cycle around and around again....sometimes I had no temp either, but chills that go along with fevers, yes. At the time I wasn't diagnosed with CREST (I have FM but that's not a symptom of FM apparently)....so I don't know if mine could have been related to SSc or not....but it sounds suspiciously so, humnnn

[barefut]

Hey Tange,

So sorry you are feeling icky. My situation is a lot like Vee's. I have recently weaned off pred altogether - about a week ago and I do feel the pain and stiffness again but I am going to try to tough it out.

I have also wondered what else IS there, so thank you for the question. I don't know why my doctor has not talked about Plaquenil. I hear it has been very helpful to many.

I hope you find a solution soon. I know how you feel.

Love ya,

[Patty1]

Hi Karen,
Not so much on the fatigue and stiffness but my Rhem. thinks that the combination of the Plaquenil and Methotrexate are slowing down the disease progress. I have to have faith in what they tell me, as the few times I have had to come off of the two, I have felt alot worse I also know that at the time of my diagnosis of Limited SSc. my fingers had swollen enough to have my wedding rings sized up two sizes, the swelling had started the previous year, and I just put it down to water retention! HaHa!! But I haven't had to have them resized again yet.
The down side to Plaquenil, is I have to have a field vision test done every year, as Plaquenil is suspected to cause problems with periferal(sp?) vision. So far all is well.
Stay warm,
Patty

[Karenlee]

Patty,

Wow, not with the stiffness huh? That's a bummer. My rheumatologist never mentioned Methotrexate to me. But he sings the praises of Plaquenil and thinks it should be in all the drinking water. As far as vision, I'm already blind as a bat (no not literally) so I don't think that will bother me much. I guess like anything I'll have to weigh the pros and cons when I'm on it and see.
Such a drag that I couldn't stay on the Prednisone. I felt like a 16 yr old again, but the side effects were just brutal. To me, not really worth it. So onward we go trying to find releif.

Karen

[Sweet]

Hey Tangie,

I feel like you described very often. Usually for me it's worse when I'm overstimulated or tired. I have found NOTHING that makes it any better for me, other than waiting it out.

Sorry love

[beaty71]

Hi Tangelo,

I feel the same way often, I always just guess that it's some kind of flare up from sclero. I'm with Sweet, I just try to wait it out feeling blah. It always has gone away after a few days to a week for me. I take plaquenil also, I'm not sure I have felt any relief from it but it is supposed to slow disease progression. Take care and I hope you feel better soon!

[smac0719]

I take a combination of methotrexate and plaquenil. I guess it's working ok, but I think I need an increase in the plaquenil. Having more arthritic pain. I still get the overall ill feeling so the plaquenil isn't helping me with that. I give myself B-12 shots for the fatigue and it seems to help. Used to do 1cc a week, but think my body got used to it so I have increased it to 1cc every 3 days. My rheumatologist says you can't get too much of it so I'm hoping that will help.

[Karenlee]

Hi smac...

You give yourself the B-12 shots?? Where do you get them from? Does the doctor have to prescribe them? And where on your body (if you don't mind me asking) do you shoot it? I'm asking because I'm interested in maybe giving it a "shot" Hahah

Thanks
Karen