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busymom3
10-09-2011, 02:39 PM
I have not been feeling very well lately. I still remain undiagnosed, but my PCM has referred me again to the rhuematologist. He said he has no trouble with that because of my blood work. I didn't think to ask what my blood work was. Dumb. I do know that I have had a positive ANA.

Anyway, it just seems that every day is something a little different. For a week it was my hips. I would have to get out of bed 2-3 times a night and walk around because they hurt so bad. Now they aren't bothering me much. Yesterday, it was my shoulders and my arms. I couldn't lift my arms to get things from the cabinet. Today, my arms feel better, but it feels like there is someone pushing on my chest and my fingers do not want to cooperate as I type this.

I was just wondering if as this was normal. I know I am a sporadic poster here, but I do appreciate your insights. I do feel that something is going on. My dad was diagnosed with RA last year. I do not have the same symptoms as he did. His is under control now. But his swelling! His hands were like boxing gloves. Mine do not swell, but they feel like they should be. Does that make sense?

I am anxious to see the rhem. again. I hope I get a different one. The last one was OK, but didn't listen very well. My PCM wasn't pleased with what he got back from him.

All of this to ask if you guys feel like this. I seem to feel very awful in the morning. It gets a littl better then I go down hill the rest of the day.

Thanks for your help.
Tressa

howsabout
10-09-2011, 04:19 PM
Yes indeed! At it's worst, before the methotrexate, it was everything --- hips, toes, ankles, fingers, neck, chest, wrists. After it calmed down I notice that it's either one or two things at a time and sometimes switching throughout the day. It's almost always either my fingers or toes. Not so bad in my fingers but sometimes a couple ofvmy toes will feel broken. Today it was my jaw and slightly my fingers. The other day it was my right knee and my right big toe.
The methotrexate injections took most of the arthritic pain away but the general malaise and fatigue on some days is stll overwhelming.

Gentle hugs. I'm sorry you're having a hard time.

howsabout
10-09-2011, 04:20 PM
Yes indeed! At it's worst, before the methotrexate, it was everything --- hips, toes, ankles, fingers, neck, chest, wrists. After it calmed down I notice that it's either one or two things at a time and sometimes switching throughout the day. It's almost always either my fingers or toes. Not so bad in my fingers but sometimes a couple ofvmy toes will feel broken. Today it was my jaw and slightly my fingers. The other day it was my right knee and my right big toe.
The methotrexate injections took most of the arthritic pain away but the general malaise and fatigue on some days is stll overwhelming.

Gentle hugs. I'm sorry you're having a hard time.

ruziska
10-09-2011, 07:24 PM
ah, Lupus the wanderer. 14 years ago Lupus was misdiagnosed as rheumatoid arthritis as it mimicked it perfectly. The symmetry, the pain, the traveling of agony. Lately it has been my hips and ankles but that will change and why is it the worse my jaw flares, the more I crave chewy foods? So not right! Yeah, symptoms moving around is the norm

debbie-b
10-10-2011, 04:15 AM
Same here. It is so bad sometimes, that my husband has said," i thought it was your hip that hurts", then I have to tell him, that today it's my neck and shoulders. A few days later it's my arm, my knee, my ankle and so on. The only thing that always hurts, are my fingers, they hurt on a daily basis.

Debbie

scubagramplit
10-10-2011, 09:26 AM
And all this time I thought it was just the cns playing games with me LOL:~}

rob
10-10-2011, 10:07 AM
I sometimes imagine this microscopic band of nomadic troublemakers who are in my body with the sole purpose of messing up one part of my body, and then quickly moving onto another part just to set up shop, and do it all again. Their ultimate goal, is to confuse, frustrate, and ultimately piss me off. They feed off of the stress they cause, so I try to avoid feeding them whenever possible. It's easier said than done though.

In the 8 years I've lived with SLE, I've gone through all sorts of new and unexpected symptoms and areas of pain. Sometimes it's my neck and shoulders, sometimes my mouth is so full of sores that eating bread is like eating broken glass. Sometimes my hips hurt, other times its my feet and ankles. Sometimes my skin feels like its on fire from the inside, and sometimes I have raised burning rashes in way too many spots.

The one thing that I can count on with Lupus, is it's unpredictability.

Rob

busymom3
10-10-2011, 06:38 PM
Thank you all so much for your replies. I was starting to wrory that I was imagining it. How can my shoulders hurt so bad one day and be gone the next? I am feeling a little better today. Still tired because I am not getting any sleep, but things don't hurt quite so bad today. For that, I am thankful.
Tressa

BarbaraB
10-13-2011, 10:33 AM
Oh yes...I sometimes refer to it as the Lupus Lottery of Pain. It's like my meatloaf...never the same way twice. My hands are always hurting to some degree. Some days I can't even take dishes out of the dishwasher, but yesterday I cleaned the kitchen. As for the other body parts...well, I wait until after I've had tea, breakfast, coffee and a shower before I come to any conclusions about what's going to hurt for the day. I guess it takes a while before I really wake up and that usual first thing pain/stiffness wears off. Then I can adjust my day accordingly. Thank goodness I no longer work but my poor husband never knows what he's coming home to. He's very understanding and has a broad definition of what "dinner" is. I've asked the doc why this is and he told me, "just the nature of the beast". Very unsatisfying.

debbie-b
10-13-2011, 12:24 PM
Oh yes...I sometimes refer to it as the Lupus Lottery of Pain. It's like my meatloaf...never the same way twice. My hands are always hurting to some degree. Some days I can't even take dishes out of the dishwasher, but yesterday I cleaned the kitchen. As for the other body parts...well, I wait until after I've had tea, breakfast, coffee and a shower before I come to any conclusions about what's going to hurt for the day. I guess it takes a while before I really wake up and that usual first thing pain/stiffness wears off. Then I can adjust my day accordingly. Thank goodness I no longer work but my poor husband never knows what he's coming home to. He's very understanding and has a broad definition of what "dinner" is. I've asked the doc why this is and he told me, "just the nature of the beast". Very unsatisfying.

Even though what the doctor said is unsatisfying, it pretty much summs it up. It is "the nature of the beast", until someone finds a way to kill the beast.
My rheumy always said" that's Lupus for you". I hated when he said that, but it is the truth, that big Wolf, will attack us wherever and whenever he pleases.
BTW, I love your sense of humor in your posts. The "meatloaf and the definition of dinner", made me laugh.

Debbie

Mommyof1
10-19-2011, 07:39 AM
A lot of what you just listed sounds just like me! I got pleurisy twice last year which was new in comparison to all my other symptoms and was given the you basically have SLE but you just can't be put into clinical trials answer last May when I saw my Rheumy and she put me on prednisone and talked about future meds such as Imuran or Metho & if that didn't work, Benlysta infusions. Was just wondering what they're using to treat your symptoms especially "skin on fire from the inside"..I get this and it started in my thighs only, then spread down further into my knees and legs and then started in my arms and shoulders and the back of my neck. I've tried neurontin which didn't work at 900mgs and Naprosyn touched nothing at 1000mgs. Then I also tried Cymbalta one night but it gave me way too many sgnide effects to continue trying to get my body used to it. I now get the burning in all those areas. I too get burning rashes but they are not raised. You can see the skin is smoother and pink or red but it's flat and on my face(butterfly)as well as my chest in blotches and my arms full coverage but just on the tops....

rob
10-19-2011, 04:17 PM
Was just wondering what they're using to treat your symptoms especially "skin on fire from the inside"..


Hi Mommyof1,

I have not found anything to reliably help with the burning from the inside sensations. My problem is that I have the two "biggies" of the autoimmune world-SLE, and MS. It's hard to tell where the SLE stops and the MS begins. Much of my burning sensations can be caused by inflammation from Lupus, but they can also be caused by Central Nervous System damage and inflammation from the de-myelinating effects of Multiple Sclerosis.

I use a topical steriod cream that does help when I get the raised bumps. I also find that sometimes an antihistamine like Benadryl helps, but these methods only give me spotty results. I get pleuresy and costochondritis often, and I use the NSAID Naproxen (Aleve) and it helps with inflammation of the connective fibers in the ribcage which causes costochondritis.

Drug-wise overall right now, I take 200mg Plaquenil twice a day. I take the Naproxen as needed, and I get an IV infusion for three days each month of Methylprednisolinone to slow down or hopefully stop the destructive effect MS has on myelin, white matter, and to keep my eyeballs from feeling like they are going to explode from optic neuritis.

There are many symptoms common to both SLE and MS, and it's nearly impossible sometimes to figure out just what is causing my various symptoms at any given time.

Rob

tgal
10-19-2011, 04:34 PM
I think that is part of the reason the doctors think we are nuts is because nothing is ever the same! OK, not nothing but one day something is fine and two days later it feels like it is going to fall off (or you wish it would!).

The burning on the inside of the skin is terrible. Add that to a day of the outside of the skin hurting to the touch from the fibro and I promise I wish I was a skeleton!

howsabout
10-21-2011, 08:39 AM
I know exactly that burning from the inside feeling. That's exactly what it feels like when my joints are REALLY acting up. I get joint pain then the awful burn to where my skin over the joint will be too sensitive to touch. It's like it's itching and burning like crazy at the same time. These are the days I start to sob. I'm new at this so I can still be a weenie at times.

My body reminds me of a pin the tail on the donkey game. It's a big not so fun game of pin the pain on the body. Lately it's been my shoulders which shoots pain down to my elbow but lucky for me it's not as constant as my fingers or wrists. The dull pains are more reliable, they like to hang around. The sharp shooting "omg I feel like it's broken" pains will hang around for a few hours and leave. That's always fun, explaining that to my husband when he says "I thought you were in so much pain you couldn't move" and I'm like "nah, I'm okay now" it makes me look like I'm nuts!

rob
10-21-2011, 02:00 PM
I know exactly that burning from the inside feeling. That's exactly what it feels like when my joints are REALLY acting up. I get joint pain then the awful burn to where my skin over the joint will be too sensitive to touch. It's like it's itching and burning like crazy at the same time. These are the days I start to sob. I'm new at this so I can still be a weenie at times.

I'm not new at this, but I still have days when I sob not so much from the pain, but out of pure frustration and lack of sleep. Constant pain, even low level pain, can really wear a person down sometimes.

You are definitely not alone.

Rob

laurad52
11-14-2011, 08:26 AM
Love your post Rob! I literally feel your pain! I am told I have R.A., but am still questioning if I actually have Lupus. I have problems with swollen ankles, get up to urinate several times at night. For seven years I have been getting rashes, sometimes I get the butterfly on my cheeks,(have not had a rash skin tested yet) even had my husband take pictures to show my Rheumy, she said it looked like ROESHA, my blood test never show for lupus, but neither does it for R.A., but xrays of feet proofed R.A., Dentist and Eye drs. also think I have Shogren's, my gp said I probably have Raynauds because of my hands and feet get so cold. I have an enlarged thyroid,hypothyroid, endo dr. thinks it's Hashimotos , recently diagnosed with hypoglycemia. I get the nose sores, I've had infected sweat glands removed twice from underarm, unusual the dr said because it is usually hair follicles. Recently had a boil on my rear, dr said usually due to infected hair follicle, but wasn't. I through too many days feeling fatigued and sore either all over, like the flu, or certain areas. I have used the term "attacked" many times because that is how I feel. I also have sinus problems, have seen the ENT dr for many years, and a foot dr. my husband makes fun of how many drs. I have. I have heard it can take many years to get a diagnosis, I just want to feel better. I take plaquenil, which I have read can possibly be contributing to my hypoglycemia, but so may the hypothyroid, I take Embrell shots weekly, I also have onset of osteoarthritis. I take Ultram ER also, 2 blood pressure meds, cholesterol med, and an anti depression.
So if you have any words of wisdom or thoughts on my issues, I would be open to hear or read them:)

Thanks for being here.

Laura D.

steve.b
11-15-2011, 03:06 AM
hi laura,
and welcome.
it is not unusual for a person to have more than 1 auto immune disorder, at the same time.
there is acttually 63 of them, we have a thread listing them.

it is also not unusual for symptoms to overlap.
that is to say the same symptom can be from more than one disorder.

that is why i often say, putting a name to the problem, is not as important as......
getting the correct medication.

do you have a primary care giver. someone who co ordinates all the different doctors notes.
some people try to do that themselves. i use my gp.
whith you seeing a few different specialists, it may help.

again welcome to our cyber family.

jmail
11-15-2011, 10:51 PM
Excellent point, steve.bryce. I'm of the opinion that my pcp is more important than my hematologist, rheumy, opthamologist, or endocrinologist (sorry if I mis-spelled anyone's title). My doc is excellent. I almost didn't call her yesterday, but the wife insisted, and the doc made room for me in her schedule. She went over all the recent reports, asked questions, answered some of mine, she took notes (found I was starting on pneumonia again), and will be asking for some other blood work from the hematologist for when I go there at the end of the month. Now I won't have to remember all that stuff. Co-ordinated effort on all fronts... Nice.

NaturalMystic
11-16-2011, 04:08 AM
I thought I was going crazy! My pain is always moving. It seems one day it'll be in my elbows, then a few days later it's in my ankles. When I'd go to see my doctor, I would laugh because he would ask how my elbows are - they're fine, but the ankles make me want to scream.

I've had that "skin on fire from the inside" feeling as well. I've jumped in the shower thinking it would help, but it didn't - still burning. I pretty much just sat there and watched my skin turn bright red and every joint in my arms and legs swell up to 2 times their normal size. Not sure why it happened, but I'm guessing it's just how my body reacts to one of my flares. I'm guessing I probably over-did myself that day too. I've slowed down quite a bit since then...

Blessings, Love & Aloha,
Ty

rob
11-16-2011, 07:32 AM
So if you have any words of wisdom or thoughts on my issues, I would be open to hear or read them:)

Thanks for being here.

Laura D.

Hi Laura,

Steve has pretty much said what I was thinking, so I can't really add anything else.

I hope you get things figured out ASAP.

Rob

Nutmeghers
11-16-2011, 02:12 PM
ah, Lupus the wanderer. 14 years ago Lupus was misdiagnosed as rheumatoid arthritis as it mimicked it perfectly. The symmetry, the pain, the traveling of agony. Lately it has been my hips and ankles but that will change and why is it the worse my jaw flares, the more I crave chewy foods? So not right! Yeah, symptoms moving around is the norm
Ditto on the jaw being the worst. My joint pain moves around. Back before I uses diagnosed I used to cycle through symptoms too. I'd have joint pain, pericarditis and a low fever then my fever would spike and I'd have extreme nausea and vomiting, but my joints would feel great.

rob
11-16-2011, 03:34 PM
Ditto on the jaw being the worst. My joint pain moves around. Back before I uses diagnosed I used to cycle through symptoms too. I'd have joint pain, pericarditis and a low fever then my fever would spike and I'd have extreme nausea and vomiting, but my joints would feel great.

My jaw has been one of the major sources of pain that I've had to deal with. When I was first diagnosed with SLE my jaw was popping all the time, and I'd wake up in the morning with it popped so far out of place that I would literally have to push it back into place before I could talk, or eat. It was miserable. Then, after maybe a year or so, it just stopped acting up. Lupus is a weird frakking disease.

My latest problem has been with Trigeminal Neuralgia. From the right side of my jaw up through my temple come these sudden shooting pains, like electricity and a red hot poker. T.N. is a neurological problem though, rather than an actual problem with inflammation in and around the TMJ like my first problem was.

To say the pain is horrendous would be an understatement. It's the sort of pain in which you don't care what has to be done to make it stop. If I have another bout of T.N., my only options are targeted radiation, or actual neurosurgery to find the problem and repair it. The problem is caused by a blood vessel pressing against the trigeminal nerve at the base of the brain. It causes the nerves in your face and jaw to think that there is some sort of direct painful stimuli happening, and those nerves send signals to your brain that are interpreted as pain.

I wouldn't wish it on my worst enemy.

Rob

PS-Welcome to WHL Nutmeghers!

steve.b
11-16-2011, 04:39 PM
welcome nutmeghers,
nice to have you join our cyber family.

when you are ready, add a little about yourself on your profile.
it is a place where you can add things you want us to know about yourself.

again welcome.