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Mish0609
New Member


Date Joined Oct 2009
Total Posts : 10
   Posted 11/10/2009 9:24 PM (GMT -7)   

Hi Everyone

 

I need a vent session.

 

It seems over the last 10months there have been more bad days than good.

 

I just seem to be so exhausted all the time, although my joints havent been aching as much which is a massive bonus!

It feels like Im walking around in a complete daze, I feel vague and often feel very short of breath and even a bit giddy. I had a friends wedding on Sat - I woke up feeling terrible so slept in, went to the church, went back home and slept, went to the reception and had a meal and then went home and slept while my Husband enjoyed the evening. I just felt so frustrated with it all.

 

Im sitting here at my desk trying my very best to concentrate...my Rhmy tells me I must keep active - yet its been over a week since I could push myself to even go for a walk and I am a very determind person. (now to set the scene I am naturally a very active person)

 

12months ago I started with a small discoid mark on my leg the size of my little finger nail and it grew to the size of a 50c coin (aust) and 3 diff steroid creams to finally go away... then I noticed one on the inside of my leg which wont go away, then one started on my cheek and then one on my hair line. Does any one else experience these? are these another symptom? I seem to be gradually accumulating more and more symptoms.

 

Ive been diagnosed with UCTD/MCTD with the symptoms of raynaud's disease,  rashes, fatigue, low white blood count, positive ANA, low iron, swollen joints, foggy thinking, headaches etc yet my specialist is hesitant to put me on any medication as he feels the side effects are not worth it. Has any one else experienced this though process before?

 

I just feel like there must be more I can do...I eat right I rest when needed...Im 26 and feel so much older than my age!

 

x


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/10/2009 9:32 PM (GMT -7)   
You're not on any medication!?  Mish, the side effects of most of our meds are well worth it.  Yes, the side effects can be difficult to cope with and not everyone will respond the same way to each medication, but you have to try something!  I'm shocked your specialist would settle with that opinion.  Is it a rheumatologist you're seeing? I would recommend being very insistant about getting treatment started and if they quibble about it at all, dump them and find a new rheumatologist.  Not being medicated can certainly make you seriously ill or worse....
 
Keep us posted okay?
 
Ginny 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content. Phillipians 4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 11/11/2009 8:53 AM (GMT -7)   
Mish,
 
Find another doctor. Although your symptoms are relatively mild your dose of meds will not be that high and probably not produce dire side effects.  Not everyone has bad side effects but if you have been diagnosed with an overlapping connective tissue disease you should be on some controlling meds to stop disease progression.
 
MCTD is a specific diagnosis so I am puzzled why your doctor would say UCTD or maybe MCTD.  Sometimes UCTD does morph into MCTD but treatment for both is the same. 
 
Make sure your new doctor is experienced in treating AI diseases.
 
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.


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 11/11/2009 8:57 AM (GMT -7)   
Hi! Everyone,

and welcome, Mish. Thoughts? THOUGHTS?? I think I am too tired to have any. Wait a minute, ok,.... maybe after a nap... nope, doesn't help. Drugs is good, (legal ones) I agree with Ginny, you need a better rheumy. If you look at our profiles, you will see how many meds most of us are taking, and how many of the same ones. Welcome to our world of joint pain and brain fog and systemic exhaustion to an extent that most people have never had to experience! And we are NOT taking them for the fun of it. I told my dr. that if I was going to demonstrate drug seeking behavior, it would be for Vicodan, not prednisone, marijuana, not an NSAID!!! HELLOOOOO!!!! You should have seen the look on his face! Plaquenil is one of the basics that are considered the most disease modifying for the more manageable side affects. And remember, a side effect is something we manage and keep taking the med for, an adverse reaction is one that causes the drug to be stopped asap if not sooner. Think diarrhea, take yogurt or immodium, think tongue swelling, benadryl and go to the hospital. Some of the best lupus drs. are the ones affiliated with a lupus research dept. at a teaching hospital with a medical school. Take care and keep us posted,

hugs,suetoo

Mish0609
New Member


Date Joined Oct 2009
Total Posts : 10
   Posted 11/12/2009 6:28 PM (GMT -7)   
Thanks Guys

Yesterday I went to see a new naturopath (Ive really lost faith in traditional medicine). He was great!

Im trying all these natural supplements to see how they go. Apparently he treats many Lupus, MS,Fibromyalgia etc patients and the proposed plan has helps 85-90% of them.

Im going to give it a go and let you know any updates. (Its all worth a try isnt it :) )

have a great weekend.
M

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 11/13/2009 9:23 AM (GMT -7)   

Hi! Mish and everyone,

I having been having accupuncture treatments for a year, and it has really helped my neuro symptoms. I haven't fallen since I started and my ataxia is so much better. She is a Chinese trained herbalist, too and I take gan mao ling when I start to feel a cold coming on. I am an old nurse, and I have learned to have faith in so called 'alternative and complimentary" therapies. I hope yours helps lots!

hugs, suetoo


God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.

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