I dont know what is wrong with me????

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Mkayla
Regular Member


Date Joined Sep 2009
Total Posts : 25
   Posted 10/22/2009 8:10 PM (GMT -7)   
 I am still new here and do not understand all that is Lupus. I was diagnosed 2 months ago. My symtoms began 5 months ago. I am now taking plaqunil, asprin, ibprofin and pain meds when all else fails. My symptoms have got better for what reasons i dont know. I have so may questions and have tried to look them up online. So im just going to throw them out there for any awnsers you all may have.
  Is it better to live in the desert or somewhere that is cold for people suffering from Lupus? If the sun dosnt cause rashes or the feeling of being ill can it cause migranes, brain fog, fatigue? I have recently moved from Colorado to Arizona and have seen most symtoms go away, but now its starting to cool down there creeping back.  ive had brain fog and fatigue for the past week. I have to talk myself into making a cup of tea or coffee. I sleep well for the most part  other then tossing and turning but still feel like i could sleep all day.  I also  suffer from depression for the last 5 yrs its mostly under control with meds. So im not thinking this is depression peeking its ugly head so maybe its the meds or the disease. I am just so out of it. I have 2 kids and taking them out to run a erron  or 2 Ive ended up with horrible migranes... Makes me feel so lost. 
 Im not so much in dibilitating pain as I am still not able to function as I would if i didnt have lupus. I am fighting the feeling to just stop typing and let my brain relax.... but I need  to know why im feeling thease symtoms. I know stress, depression  lupus are all on my side i just feel like if its not one thing its another. Ive lost my focus.
Mkayla


flower woman
Regular Member


Date Joined Oct 2009
Total Posts : 40
   Posted 10/23/2009 2:45 AM (GMT -7)   
Hi Makayla,all sounds very familiar!   The weather's a tricky one! We have to be very carefull with the sun to prevent flares...it took me a while to accept that some of my symptoms were related to sun exposure and i avoid staying in the sun for long periods and when i do i use factor 50+ and cover up at intervals when it gets very hot...in fact this year i have become so sensitive to the sun i have had to avoid been outside for any lengths. Here in not so sunny England the cold damp weather conditions kreep in about this time of year and my body knows and i really have to wrap up warm or i suffer in pain in areas i did'nt suffer with before! I went to New York in July a few Years ago! I had double vision and other migraine type symptoms fluctuating daily from sun exposure..had to wear a hat and had to take naps! Took some fantastic photoes though to paint when i got back home! I force myself to paint sometimes to justify my existance having had to give up work a few yrs ago sadly! I now take predisalone daily over a number of years since i started to feel so weak on a daily basis without and i think i'll always take it now since i've failed to reduce it to lowerer than 3mg a day and to be honest i have'nt been well since i did and i now take 7 hope to get back and stick on 5mg daily! Hope this is helpfull....I've had lupus now for about 9yrs,i'm 47yrs,single,learned to love my home and garden and a simple life with an appreciation of other people and their probs like never before!
SLE sufferer with APS on plaqanil,mepacrine,pred dose dependant on flares,asprin,omeprazole,calcichew D2,fluoxetine and various pain meds.


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 10/23/2009 5:52 PM (GMT -7)   
Hi Mkayla, welcome! When I am in the sun or heat, I get fatigue, headache and a rash. I live in the South so the summers are tricky and of course I love the beach and grew up on the lake; camping, boating & sun bathing! I have to look at it on a positive note, my skin will thank me when I get older (I'm 38)!

It can take months, sometimes as much as 6 months for Plaq to kick in and really get in your system. It really helped my fatigue levels but fatigue is the one thing we all suffer with and there's not much we can do about it. We have to be kind to our bodies, eat right, listen to it and rest when needed. The physical limitations of this disease is the hardest thing for me to deal with.

If you are still feeling this way in a couple of months or don't feel like the meds are working well, talk to your doctor, there may be more meds that can be added to make you feel a little better.

Hang in there and feel free to ask more questions. Take care
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 10/23/2009 8:31 PM (GMT -7)   
If you have a choice live where you are happiest.  Don't think your return of symptoms has anything to do with the change in weather in AZ.  Some lupers are affected by very cold and damp weather like many arthritis patients.  Unless you live in Flagstaff it is not that cold in AZ.
 
If it is a fallacy that everyone with lupus is sensitive to the sun.  It does not affect me at all.  But some lupers have a terrible time and if they live in the south or southwest it is more difficult.  Some have raynauds phenomenon and living in a cold climate is painful.  I have it and love winter sports but have learned to dress to cope with temps down to -10F. 
 
How is your lupus being treated?  There is a definite neuro psychological impact from lupus for some patients.  It hit me but only in short term memory and concentration.  There was a distinct change in 1 month and it has gotten a little better over the past 4 years.  If you are taking prednisone that can also cause problems. 
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 10/24/2009 1:51 PM (GMT -7)   
I am going to suggest THE LUPUS BOOK by Dr Wallace. It will help you and your family understand you illness. This is a great place to come for support.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

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