[wisconsingal]

Hi all..

First of all...I want to thank you all for responding to my first post....I am overwhelmed by the helpful and caring nature of everyone here!! I really appreciate it!

Ok....just wondering if this sounds "flare-ish" to anyone? Wednesday..I worked dayshift...did pretty good most of the day but then right around the time I was done....I just had an immense sense of fatigue. I left work...started driving home and developed shaking chills and a severe "flu-like" feeling. Got home...got out of the car and realized all my joint and muscle pain was a lot worse (than my norm). I then developed a pretty severe headache. Took a Vicodin and laid on the couch...Vicodin helped a lot but still felt pretty terrible.

Woke up Thursday morning and today...feeling like I've been hit by a truck...severe and overwhelming fatigue. It is literally an effort to walk even a few feet..I instantly feel very weak and almost short of breath.

I've also had an increase showing of "my weird rash". It is so weird and not sure if anyone gets this but...all of a sudden..a random spot on my skin will feel hot..almost sunburn like...when I look down..I have a red blotchy rash. Rash doesn't last long at all and then will show up in a different place later on. Still have my palm rash...that never seems to go away...does seem to get more red looking when I'm feeling worse. This site has made me hate the Rheumy I saw even more...he said "he isn't familiar with palmar rashes being related to lupus....and said if my labs come back normal...then the rash is something else. Well...I've been doing a lot of reading on this site...and I've seen "palmar rash" listed as a symptom several times...grrrr.....

Oh..also with this flare (or whatever it is) of whatever I have...I've had horrendous back and tailbone pain. I know the spine is not usually involved with lupus..so not sure if that fits in. It may be my endometriosis acting up again.....I had horrible tailbone pain before my last surgery....my colon was "tethered up" with adhesions.....after the surgery...tailbone pain went away...til now...

Hummm......I am so frustrated of hurting so much and feeling crappy pretty much all the time. I really do feel like a hypochondriac sometimes. I feel bad too...I've been continuing to use Vicodin...usually just one a day...but sometimes..(during this flare)..I've been taking it up to three times a day. It's there and it helps the pain.....so I use it. Then I feel bad when I'm out and have to contact my GP...he is very understanding and hasn't mentioned any "issues" with the vicodin usage. I told him...if I could find a different med that worked...I wouldn't need the Vicodin. It's just so hard...I'm always sooo afraid of the "seeker" label....it's especially hard when you work with your GP..I just feel weird about it.

Ok..better run...I am counting down the minutes until it's time to go home. Was really slow tonight...which is good in a way..because I'm feeling so crappy...but it sure makes for a long shift!

Ok..thanks again everyone..

Hugs

 

[Katharine]

Hello there,

That does sound very like a flare (unless you have simply got the flu which is always a possibility we have to think about).

It really is time that you sought that second opinion. It is awful to feel reliant on painkillers and at the same time to feel that you are somehow doing something wrong by wanting to get some relief

I hope this passes quickly :hug:

Katharine

 

[Barb G]

wisconsingal,

Have you or your rheumatologist considered psoriatic arthritis? The reason I ask is because it's an autoimmune disease with flares that can cause a rash on the palms of hands and on the scalp that also involves the spine. Psoriatic arthritis is still a possibility in my case so I know something about it for that reason. I have a malar rash and fit the criteria for lupus but also other autoimmune diseases so I don't have a firm diagnosis yet. I recommend reading as much as you can about psoriatic arthritis.

http://my.clevelandclinic.org/disorders/Psoriatic_Arthritis/hic_Psoriatic_Arthritis.aspx

http://www.lib.uiowa.edu/HARDIN/md/psoriasispictures.html

http://dermatlas.med.jhmi.edu/derm/IndexDisplay.cfm?ImageID=14

Barb

 

[lazylegs]

It sounds like typical flare to me, but like Katharine said it could also be a flu or virus. I suggest you increase your amount of rest. If things don't improve after resting for a few days I suggest you contact your doctor.

Also, take photos of any rashes other than the ones on your palms.

I hope you start to feel better soon.

Take care,
Lazylegs

 

[onetay]

It sounds like you have a flare going on to me. You might want to checkout that tailbone pain as you might be having the same problem as you had before starting again. It seems that your work had some effect on the start of the flare as it was at the end of your shift. Try to get some extra rest and take all your meds and if you don't start feeling better soon you might talk to the doctor as sometimes steriods have to be taken to get a flare under control. I hope you feel better soon and start doing better.

 

[Pink Pearl]

Hi, and welcome to the board.

I concur that it sounds like a flare to me too.

The 2nd rheumy I saw told me he didn't believe anything was going on unless he saw it. I asked if I was to call him at 3 in the morning when I was running a fever, and was he coming out to the house as his office was an hour away. He didn't last. This was before digital cameras came out.

Years back, I asked my pulm doc if he would be willing to take the responsibility of being my only doctor who wrote narcotic prescriptions. That way, it took the feeling away that I had to "beggar" myself asking all the doctors for help when I saw each on a different schedule. He agreed...bless his soul. It has worked very well for us for 15+ years. It also has the added benefit that if there was a drug review for the narcotic meds, that all the information was in one place. Now, the AMA recommends this practice for patients who have multiple health issues.
Perhaps this would work well for you too.

I have degenerative disc disease in my lower spine which my rheumy says is from the lupus. Most likely added to it the sports I did in my BL (before lupus) days and the teaching of them. There are a lot of people I have known with back problems of one form or another who have sle. To so blatently cross them off, is rather stupid in my opinion. Lupus can affect everything from the hair on your head to the tips of your toes and everything in between. That is why it is often called the "great imitator".

I wish you luck in sorting everything out.
Sally

 

[Douglas]

Howdy,
Sorry you are having so many challenges.
Barb's mention of "psoriatic arthritis" reminds me that, thirty plus years ago, that was one of the suggested diagnoses of my problems. "All the symptoms of rheumatoid arthritis but with a negative Rh" was one description. They also said at one point that I would be "in a wheelchair within five years - for life". Today the closest things I have to a wheelchair are my motorcycle and my walking sticks. All of which has led me to a simple single conclusion:
Autoimmune diseases are difficult to distinguish one from another, overlap and have severe identity crises. They don't know what the $%&^ is going on! The medicos are confused and confusing, the diseases do whatever they want and we patients just roll with the punches and get on with our (adlmittedly limited) lives.
All the best to you!
Douglas+

 

[KarolH]

Douglas I could not have said it better then you did.

Ditto what Douglas said.:wink2:

 

[doris999]

Douglas,
Never a truer word said.

Sandra......