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Posted 7/25/2008 7:04 PM (GMT 0)
Hi all,

 

I posted this in the fibro forum as well....

 

Well, I've had fibro and lupus for over 8 years now. You'd think by now I could figure out what was affecting me.  Usually I can tell if it's fibro or lupus, but right now I'm in a total quandry.  This doesn't feel like lupus, and it doesn't feel like fibro.  It's different. I don't like this!  Make it stop! LOL.

 

I have all over joint pain.  It's weird.  Started in my feet a couple months ago and now it's all over my body.  I've never had this with my lupus. Joint pain is new for me.  I'm also super fatigued. I feel like I'm trying to function on a bottle of sleeping pills.  Today has been the worst day yet for this. 

 

Is all over joint pain (the kind that comes and goes and moves around all day long) a common symptom in fibro? I hate having new symptoms and not knowing what to do about them.  Thank you for any advice or suggestions!

 

Ginny

I know we can have the fleeting joint pain in lupus. I've just never experienced this before. Feels like arthritis. My neck arthritis is definitely flaring right now.  Does arthritis cause such awful fatigue?  I'll ask that forum this too....
Posted 7/25/2008 7:18 PM (GMT 0)
I get an overwhelming "body-ache" from time to time with my lupus. It was actually one of my early symptoms. It's like all my bones and joints hurt, and an ache comes from them and dissipates into my muscles giving me an all over exhausted fatigued "trying to move from deep under water" feeling. I take Piroxicam every day to help avoid this, but it still happens from time to time...one day my knees, another an ankle, then a wrist....or everything... Unfortunately, it seems that lupus, fibro, and arthritis can all cause or contribute to this sort of pain. Maybe a full blood panel can help figure out which it is? If not, it seems all they can do is systematic trial and error to see what medication helps -- then sometimes they can figure out what disease it was based on what helps. Not very reassuring to always be a test subject, but it seems that's what we auto-immune folks are...sigh. Hang in there!
Posted 7/25/2008 7:47 PM (GMT 0)
Sorry to hear you are feeling so badly.  I have lupus, and often feel exactly what you are feeling now.  One of my signs I am about to get a flare is pain all over my body.  It just hurts to sit, lay down, stand... pretty much do anything :.)  One thing that is good with me though, is that it is not sharp pain, more like a dull ache.  I definatly feel the fatigue too.  It is one of my primary symptoms.  I would hate to think you're going into a flare, but when I feel what you are feeling I am normally starting in a flare.  Good luck to you.  Take care of yourself!
Posted 7/25/2008 8:47 PM (GMT 0)
(((((((( Ginny )))))))) My rheumy said that the plantar fascia is a really frequent spot for lupus to attack. I'm telling you girl . . . it took 2 years before I got any relief from that relentless attack on my feet. I also had connective tissue pain in my legs at the same time . . . it really was hard to function with all the fatigue and pain. Remember me telling that I got really sick D & Nausea and wayyyyy bad gut pain? Well I think that was a big attack of Crohns . . . but that's what abruptly ended the foot pain and the rest of that 2 year flare. It ended during that week that I was so sick. I think my immune system got distracted by something else and forgot to go back to the legs and feet attack!! Ha haaaa. I hope this doesn't last Ginny . . . its really hard to describe the misery to others. Blessings!
Posted 7/25/2008 8:53 PM (GMT 0)
Hey Lynnwood.  Yes, yes, and yes!  I feel like I"m trying to move under water. I haven't had fatigue like this since before my diagnosis 8 years ago.  Unfortuntately, I was chronically anemic.  That has been running through my head all day.  Am I anemic again, am I anemic again.... BLAAAAAAH.  I'm definitely going to get a full CBC and my usual monthly blood tests done on Monday.  I wish my rheumy wasn't on vacation right now.  It's right in the joints kind of burning, stabbing pain, along with this annoying fatigue.  I have strength though.  I feel strong.  So now my theory of anemia is out the window.  I wouldn't be feeling strong and stable if I was anemic....  eyes

 

I totally feel like a guinea pig! Thanks for your support and suggestions.  I think we need to get on this asap.  I haven't been my old self since that drug allergy in '07.  I'm different, and my lupus is different.

Hi Stars!  You're new!  Welcome to the forum. I better not be going into a flare.  My flares don't usually present themselves with this set of symptoms.  If it's my lupus, I always feel like I'm getting the flu.  If it's my fibro, I can't think straight, and I have incredible soft tissue pain all over my body.  I'm not having any of those.    My feet are driving me insane.  I want to take an axe to both of them and get this over with..... No worries... I'm all talk, no action. LOL.

 

 

Posted 7/25/2008 8:58 PM (GMT 0)
Oh, yeah, I forgot to mention the burning pain I have deep in my joints. Feels like someone dropped molten glass in the middle of the joints....so far only happens in the toes of one foot and deep inside one hip, I hope you don't have that all over. So far nothing has really helped it, but it does seem to go away (at least for me) in 4-5 days.
Posted 7/25/2008 10:02 PM (GMT 0)
((((( Ginny )))) Bless your heart! I've had the all over painful body when my doctor took me off Plaq and then again when she took me off Piroxicam. I have never experienced that kind of pain, it was awful. Has your doctor changed any of your meds?

It could be new lupus symptoms for you :-( I have a lot of joint pain, especially in my hands, wrist and feet which nothing seems to help 100%. Mtx helps with my hip and lower back pain, I just figured I would always have some kind of joint pain.

I know what you mean about the fatigue, it's been hitting me really hard too. Let us know how the appt goes on Monday. Take good care of yourself, maybe a soak in the tub and a warm heating pad tonight.
Posted 7/25/2008 10:41 PM (GMT 0)
Hi everyone LTNS for me...I was trying to sign in for awhile, but couldn't remember the user name. No matter what I tyoed in it was invalid so I reregistered... I don't know if you remember me I have neuro issues such as seizure disorder, not the fall down black out kind...My head just feel weird Kind of like if there was a switch to your brain... like someone was flipping it on and off fast You know On then off quickly and it last like 2-5 second maybe slightly longer. I also have reoccurring Mini strokes the last one was in Spet of last year. My seizures have been under control for the last 2-3 yrs, with Lamictal.... I also have had an on and off again battle with Hodgkin's (cancer) . I finally did graduate last May with a BS in Biology and a minor in chemistry. it took 6 yrs but worth the effort and struggle, and time. I am now a clinical lab tech for a lab that does medical diagnostic testing. This is a lab where all the blood work and urine samples, and some tumors etc, I just started a few months ago...I also have done some part time vet teching... if there's such a word lol. for the last few weeks I'm just working the FT job... I'm taking graduate level biology courses, &on my 3rd battle with Hodgkins and doing chemo for it. I'm still working, b/c I have to and want to and still can but I have to be careful because I work with "things" that could get me very sick but when you need an income and a good one you do what you can as long as you can. I have full paid benefits -which is a PLUS. I don't know how long I can keep up the FT job and the chmo , and courses, hopefully I can continue to do what I need to...
Anyway I don't know if you remember me but my name is Carol and I believe my previous user name was Sumr or SumrAngel...Since I have a different email I can't do a request for my password. my previous user name was under another email address I don't use now....
Carol "Sumr"
Posted 7/25/2008 10:45 PM (GMT 0)
Rosie, I missed your response when I was posting. (((hugs))).  Yeah, I'm struggling pretty bad right now.  As the last couple of hours have gone by, I can feel the flu type feelings coming on.  A sure sign that it's my lupus.  I checked my temperature and I don't have a fever.  I'm perfect that way:-)

 

It's the pain in my feet, which I know you've had too, that is really getting me down.  I can't believe you had it for 2 years.  Oh Rosie.  Lynnwood, you described the molten glass feeling in your joints - and that's just how my feet and some of my other joints feel. My shoulders are bad like that today.  I'm feeling it on the left side of my ribs too.

 

Honestly you guys, how do we do this every day for the rest of our lives?  I feel I've been battling this off and on consistantly for about a year now.  With it being really bad this past 6-8 months. I go into a flare, get it resolved in a week or so, be okay for a month and then the cycle happens again.  This is my 3rd flare up since the end of April.  I've never had so much trouble staying out of a flare. 

I mentioned to my rheumy yesterday (on the phone), just before she left on her vacation, that I wondered if my prednisone and Imuran weren't working anymore. She said it's possible, but there aren't many options for me. I don't understand that comment?  There's Plaquenil, CellCept, Methotrexate.  Do I have "issues" that don't make me a candidate for these other treatments?  I just don't know.  I need her to clarify that comment. Clearly, I don't have my lupus under control.  Something needs to be done about that!

 

Stacie, you're on a combo of Imuran, Plaq, and Methotrexate. Those are all immune suppressants.  Wow.  So it is possible to add another one on to my regime, maybe?  The Imuran has caused me to have leukopenia, so adding another immune suppressant might make me too low..... Maybe that's what she's thinking...  Thank you for your kind words Stacie. 

I seem to be having a heck of a time dealing with this emotionally.  I'm crying right now actually. Am I depressed, just sad, frustrated, all of the above.  I don't know.  I guess I'm not used to dealing with all these issues all at one time.  Does anyone else just cry and let it out almost every day?  Do you feel like you're being picked on?  I feel bullied.  I feel like lupus is a big bully. Is that weird, or does anyone else feel like this?

Thanks guys, love you all,

Ginny 

Posted 7/25/2008 11:03 PM (GMT 0)
Hi Rosie can you describe what "connective tissue pain" feels like versus muscle pain or is it the same? I have had a lot of different pains. Lately a burning pain that comes on and disappears in my feet it almost feels like an eletrical shock sensation with a burning pain. It stops you in your tracks... I laso have been having something I use to have a lot right after I was Dxed with Reoccurring Mini strokes... I get a fast sharp pain in my head and it disappears just as fast as it came on. but it usually happenes in waves. Like 20 times in a row... one after the other. So I feel it come on and like its just going to continue to get intense and really bad, and it fades and then it will start up again a few seconds to a few minutes later etc. When I asked the dr about this once he told me its something Neurological and nothing to concern myself with. I thought that was weird, and like he was hiding something to reduce my over all anxiety back then which was extreme... I was 33 ( 2 months before my 34th b-day) when I had my first ministroke. Ironically my B-day is tomorrow, I will be 39.
I forgot to mention I was also dxed with Rheumatoid arthritis in 2003 as well as the reoccurring mini strokes, and about 3 yrs ago I was dxed with Raunauds after my thumbs got cold and turned blue out of nowhere... My drs have told me my Neuro issues maybe caused by lupus or MS. They seemed to lean towards MS because of white spots on my brain on an MRI, but then said a high ANA I thibk that was the test...Anti nuclear antigen I think... They said that was more indicative of Lupus. One dr said "could you have both its unlikely but not impossible" No one has DXed either or any other reason for the neuro and related issues. I have been more focused on life which isn't easy but I noticed my reoccurances of mini strokes and other neuro symptoms have really been less frequent and less severe, and I notice when I am under the greatest amounts of stress I have the symptoms more and when I think too much about the ministrokes etc, my anxiety increases and that doesn't help. So I guess I have been doing a better job of trying to stay positive and not let any of my health problems run my life. Its not always easy but I can't stand being anxious or depressed the miniute I feel depressed I feel "stuck" and like I'm not living and I snap out of it. I just hate that feeling. Anyway I was just wondering if you could descibe connective tissue pain. because I'm wondering if its one of the types of pains I get.

Carol
Posted 7/26/2008 12:22 AM (GMT 0)
(((((ginny))))) I am so sorry you are having so much pain and fatigue. As I was reading through your posts, I was thinking it most likely sounded like your lupus and it sounds like you think so too. I've had the kind of pain that you and Lynnwood described and it's hard to deal with. My son has the terrible foot pain along with his arthritis and it's the plantar fasciatis (sp?). THe pain for him is so bad sometimes (especially morning and evening) that he cries and can hardly walk sometimes. Luckily it has been more bearable for him these past few months. I can also relate to the emotional stuff that goes along with a flare. For me, the two go hand in hand. If I've had a long enough spell of feeling bad, my mood goes with it and when I feel really sick and flu-ish and shaky (like you are describing) tears come and I have no control over it. The other day I was out with my kids and felt so sick, that I just started crying in public and could not stop. Plus, you are still trying to cope with everything you went through when you almost died, so I would imagine that being really sick brings some of that back even more. There must be something in the air. I'm not as sick as you are, but for this past week I have been more fatigued than I have been for months and I am having pain in places I don't usually have pain, like my back. We've been having some weird weather though. You are right that lupus is a big bully and I wish we could all get together and kick it in the butt. Hang in there. I'm glad you are going on to get labs done on Monday. I'm sending you love and hugs and prayers.
Posted 7/26/2008 2:10 AM (GMT 0)
Hippi, thank you. (((((BIG HUGS))))).  Your kind words of encouragement and understanding go a very long way.  I want you to know that.  I'm so sorry your little boy is having the same pain and foot problems.  My goodness, no child should have to endure that. Is his arthritis the cause of the plantar fasciitis?  (I think there's a million ways we spell that word).

 

That's so true of what you said about the tears.  I have no control over them.  Maybe that's God's way of helping us release the valve :-)  We're having a lot of weird weather here too. The barometer is all over the place. I think there is such a correlation to that and how we feel.  The whole summer so far has been odd.

 

I am so angry at this disease. I want to kick it's *@% so bad.  I think I'm in the anger stage of grieving now. After almost a decade of issues, I'm finally getting mad.  Took me long enough.  My buttons were pushed that one time too many, LOL. 

 

I'm going to take an extra 6.5mg of pred tonight.  That will put me up to 15mg daily.  It worked for my last flare.  It seems to be the dose that works to send this disease running.  For a while anyway.

 

Love, hugs and prayers to you too Hippi.  Have a restful night.

 

Ginny

Posted 7/26/2008 3:22 AM (GMT 0)
(((( Ginny ))))) lupus IS a big bully and I am so sorry you are feeling bad. I find myself keeping the way I feel about lupus, flaring, etc more to myself, I don't even feel like I can talk to my hubby. I feel like I should just suck it up and move on and not complain. Then I wonder if he's sick of hearing about it. Do you feel like this too?

I'm like you, I feel my lupus is not under control, when I am flaring my GI acts up and this last time was a doozy. I plan on talking to my rheumy about maybe a medrol dose pack when it acts up, it's such a pain, I couldn't have ANY dairy, fruit or veggies at all and when I did ... look out!

yes I am on Imuran, Plaq & Mtx. They first started me on Plaq in 2004 which helped my joint pain and fatigue. Then on Imuran in 2005 to help with the GI issues and it controls it well and then Mtx in 2008 for the joint pain. Of course my joint pain has progressively gotten worse since 2004 and I'm still not pain free. When my rheumy put me on Mtx she wanted me to stop Plaq, which was not a good move, that's when I started having those terrible chest pains and hurt from head to toe. Keep in mind I am only on 100mg of Imuran, 400mg of Plaq and 7.5mg of Mtx.

There has to be some kind of cocktail of meds that can bring this under control for you. I know exactly how you are feeling, I get so mad when I have a couple of good days and I think wow this is good I feel kinda normal (if I can remember what normal is) and then BAM... lupus rears it's ugly head once again.

I know we can go into a flare from our hormones, etc there must be other things like environmental things that does this to us too... I just don't know, all I do know is it sucks!!!!! I think I am doing everything I need to do, I take it easy, I don't over do it, I (think) I get plenty of sleep and I still flare. My body just hates itself!!!!

Take is easy sis, love ya
Posted 7/26/2008 4:12 PM (GMT 0)
Ginny, I think I'm starting to flare too, and the devil about Lupus is that we always second guess ourselves. It's so insidious and vague and strange that we can't always pinpoint what's going on. I'm sorry you feel so bad and I so relate to what you're going though. My neck has been hurting for over a month. So have the rest of my joints. And the fatigue is setting in so much that it scares me.

I'm so sorry it's gotten so bad for you. I hope you can get through the weekend and call your doctor and see if they can get you in. You shouldn't have to suffer if there's anything they can do for you. You might get some relief with a bump of your prednisone, but I'd ask the doctor first. Hang in there and sleep or watch movies if you can. We know how bad it is for you and I just hate it for you.

((((Hugs))))

Pat
Posted 7/26/2008 11:24 PM (GMT 0)
Ginny said: "I seem to be having a heck of a time dealing with this emotionally. I'm crying right now actually. Am I depressed, just sad, frustrated, all of the above. I don't know. I guess I'm not used to dealing with all these issues all at one time. Does anyone else just cry and let it out almost every day? Do you feel like you're being picked on? I feel bullied. I feel like lupus is a big bully. Is that weird, or does anyone else feel like this?" (((((((((( Ginny )))))))) I'm really t-r-y-i-n-g to come out of a little funk myself. Nothing like you are dealing with. But, once again, got knocked back to starting over on my walking program. I'm SO determined!! Darnit! So . . . just last week, I lost my dear S-I-L who was battling with AI Liver disease. Its been a huge bummer for me and I'm having a hard time shaking the ache in the pit of my stomach. So, I started that new topic with the game, thinking there must be others struggling emotionally right now too. I haven't been posting much because I'm fairly negative right now. Which is not normal for me. Sorry . . . LOL . . . this was supposed to be about you (((((( Ginny ))))))) This dd paints us into a box. It just keeps taking one more bit of independence. Then, if we fight back, it takes something else!!! I SO hear you Ginny . . . and I have no organ involvement (well . . my gut . . . so I guess that's an organ) but honestly . . . it takes SO much to stay emotionally UP sometimes. OK . . . I'm viewing the inside of your little realm right now and painting some flowers for you sis. I've left a little water fall for you to listen to and to watch while you rest. There is also a beautiful Willow tree full of birds. I'll let you decorate the rest yourself!! *sigh* This is how I talk to myself when I'm trying to adjust to new limitations. I also think about Babs crossing one more bridge!! We can do that, right??? I'm sorry your doctor is on vacation. *sigh* I'm sure she'll figure out a good plan for you. Keep us posted!! Blessings!
Posted 7/26/2008 11:26 PM (GMT 0)
Hi Stacie and Pat,

 

Thank you both. (((hugs))).  I'm actually doing somewhat better today. I started getting that "flu" feeling around supper time yesterday, so that was my neon sign telling me it was a lupus flare, not fibro.  I took extra pred last night and this morning. Up to 15mg from 8.5.  I already see and feel an improvement.  Isn't it amazing how quickly the body can fight back if a flare is caught quickly!  I don't have near the fatigue today, and my joint pain isn't as bad.  It's all still there, but manageable.  So I'll take my 15mg for most of next week and then taper down.  I should be good to go!

 

Oh Stacie, yes.  I feel exactly that same way.  I feel like such a burden on my husband.  I need for him to know how I'm feeling if I'm not well, but I hate telling him all the time. He must be so royally sick of hearing it.  He is amazingly supportive to me, but still.... I often wonder if he knew back when I met him, that he would be living with such a burden and stress case, would he have married me anyway?  Yikes.  Bad place for me to go....

 

My body hates itself too.  LOL. I chuckled when I read that.  My body hates itself, but I'm doing everything I can to love it back.  It's all we can do right!

 

You take good care too sis!!

Posted 7/27/2008 2:43 PM (GMT 0)
Ginny, How great that you listened to your body and did something about it. Prednisone. I love it and I hate it, and right now I love it because it made you feel better and stopped your flare.

Rosie, I'm so sorry about your loss. You should have started a thread and shared that with us. Don't feel like you have to keep that inside and put up a good front. We want to be there for you. Bless your heart, you're really going through a rough time. The little game is a fun diversion and I'm glad you started it. Take care of yourself.

Hugs to you both.

Pat
Posted 7/27/2008 4:56 PM (GMT 0)
Rosie and Pat,

 

Rosie, once again we were both posting at the same time, so I missed responding to your kind message! LOL..  I made a promise to myself and God yesterday that I will keep positive, loving, kind, peaceful, hopeful thoughts and actions in my life.  Lupus puts enough negativity along my paths that I only make it worse by being negative myself!  I will keep thoughts of birds in Willow trees, and giggling babies, and beautiful scenes in my head.  I also need to be more active in my prayer life.

 

Like Pat said, please don't hold in your troubles Rosie! We had no idea you were dealing with some very difficult emotional things right now.  We're here for you too sis!!

 

Pat, yes, prednisone is a love hate relationship isn't it!  Every time I have to go up to 15-20mg of it, I see my scale climb 5lbs.  This is disasterous if it keeps happening.  I'll be a 200lb photographer in no time.  A photographer who's style is to "get the shot" no matter what. I'm going have troubles with mobility if I gain too much more weight.  That's one reason I need to talk to my rheumy so urgently. I need a plan that keeps the prednisone around 5mg. 

 

I"m not doing as well today. I feel quite fatigued again even though I got 12 hours of sleep last night. Blood tests tomorrow.

 

Have a good Sunday everyone,

 

Ginny

Posted 7/27/2008 6:58 PM (GMT 0)
Hey Ginny, I wonder if it might make some sense to include some RA blood work tomorrow???? I wonder if you might have some RA overlap???? The joint issue is huge and it might either rule out one more thing or nail it. I'm sorry you are feeling worse again. Thanks Patty and Ginny . . . I guess life if full of fun surprises. It just feels like we always have one foot on a banana peel!! Blessings!
Posted 7/27/2008 9:33 PM (GMT 0)
Hi Rosie,

 

I was tested for RA back in February and it was negative.  However, that can always change right!  I can't get a requisition for any new tests unless the doctor orders them, so it'll just be my standing order of routine blood work tomorrow.  I will be talking to my rheumy about the RA possibility in August.  I have no disformed joints. My fingers and toes all look okay, they just hurt! 

 

I've been resting a lot today. Just woke up from a 2 hour nap. We've got rain and thundershowers today, so it's a good day to just be inside and give my body some recoup time.

 

Thank you for the RA suggestion. It'll be talked about for sure.

 

Blessing,

ginny

 

 

Posted 7/30/2008 2:19 AM (GMT 0)
((((Ginny))))) I hope things are looking up for you. I'm so sorry you've had such an awful time! I will keep you in my prayers. I"m a firm believer in the power of prayer! God bless and keep you, Judy
Posted 7/30/2008 2:44 AM (GMT 0)
Thank you Judy. I'm a huge believer in prayer as well.  I do a lot of it!

 

My neck arthritis is killing me today.  I'm a mess.  I went up to 20mg of prednisone, and it's not touching the pain.  I don't know what to do.  I hurt everywhere.  I've never been like this.  It's upsetting.  I'll keep praying about it.

 

Rosie, so far no news from the doctor on my blood tests from yesterday. If I don't hear from them tomorrow, it means everything is normal.  I am sooooo not normal right now. mad

Posted 7/30/2008 2:44 PM (GMT 0)
I'm sorry you are still feeling bad. :( If you don't hear from them today, I would call and ask and then tell them how you are feeling today.

I will say that ultimately it was the pain you are describing that changed my initial diagnosis of lupus to RA. I am ANA positive but not RF or CCP positive so my bloodwork didn't give us a clear cut answer. I tend to have certain spots that for the most part stay flared (right thumb and both feet) but other joints that I just have migratory pain.
Posted 7/30/2008 4:18 PM (GMT 0)
Jeannie - I believe it was Barbara Lee told me that there is a new, more precise blood test for RA that has just been developed in the last couple of years. I have no idea what the cost is, but that might be something to help prove or disprove a dx.
Posted 7/31/2008 12:26 AM (GMT 0)
Hi Jeannie,

 

That is interesting.  I too was negative for RF, but not sure about the CCP.  I was tested in February.  My hot spots that are always in pain are my neck, lower back, and feet.  The migrating pain is all over my body right now. It's crazy.  Every single joint has hurt today, but not at the same time.  I do have redness on my knees and elbows, and a few of my knuckles on one hand.  This is new for me too. Is it fairly normal to not have much of an appetite with RA flares?  I'm on 20mg of prednisone and I should be eating my face right now, but I have hardly had anything to eat for 2 days.  I have to force myself to eat.  This is SO weird....  And the fatigue!  BAH!!!! 

 

Lynnwood, you are correct. I came across a new blood test that is more specific for RA, and it's very new.  I found it on the Arthritis Society's website this morning.  Can't remember the name of it though. 

 

 

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