Life as I know it

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hanginin
Regular Member


Date Joined Jun 2008
Total Posts : 59
   Posted 8/8/2018 6:39 AM (GMT -6)   
Good morning everybody, all the best to you.
I post today as I am unsure how to handle my seemingly new normal.
I am speaking of pain, stiffness and fatigue.
It is not much of a post, not new or interesting but there feels
to be something different to the standard.

I don’t have an answer for why it is happening but I know it is more profound than ever before.
I ache and my muscles are hot and stiff and so sore. They don’t seem to want to perform for me
anymore. Even my lungs are joining in so it is hard to breath.
The fatigue so far is unshakable and the more I ask my body to do anything the worse the fatigue gets.
I have been trying to keep as active as possible as after months of this I can’t imagine resting yet another day is a good idea. Not to mention the monotony.
Plus all that resting and self control to stay put just doesn’t seem to pay off in the end.
I mean how long do I have to rest to get to have a morning to pick up a few groceries or an afternoon
to go to lunch? Work? Well forget that all together.
We have been readying our house for sale and I can’t get anything done.
I am posting this on my iPad, in bed, with one finger and it’s wearing me out!🤨

I don’t understand this at all. I don’t recognize it. My life as I know it is gone.
I have Mixed Connective Tissue Disease. Lupus, Sjogren’s, and some other things.
Delt with them for years.
But not this. Anybody have ant ideas.
Thanks tuffymason

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 8/9/2018 3:32 PM (GMT -6)   
MCTD is classicly defined as having symptoms of sle lupus, polymyositis (also dermatomyocitis), and scleroderma. I have MCTD with symptoms of lupus and pm and had an extreme and life threatening case. In 2005 I almost died after losing 40 lbs of muscle in a week which left me with auto immune induced hepatitis (near death), quadriplegic with a feeding tube. Lupus hit my kidneys, entire gi tract, joints, blood, and other things. I was a mess but IVIG saved my life and I went through a remarkable physical rehab and within 3 years returned to a pretty normal and active life. PM went into remission and I have not had to treat that for many years. Lupus also did but 4 years ago attacked my liver and blood (platelets). In the past year lupus has given me periods of profound fatigue but none of the labs confirm that lupus is active. 2 years ago I could hike 10 miles or more but now I can barely walk a mile and get tired going up 2 flights of stairs. Although I am getting older and some other problems have developed in the past 2 years I am struggling with daily life due to fatigue. My team of great docs do not have an answer because there are no red flags from any of the tests I have had including heart. For the first time in my life I was sick for 3 months last winter with bronchitis twice and the flu. That might have been a factor and I am hopeful that my body will recover eventually because I still have a lot of life to live....I hope. My personal belief is that the fatigue is either being caused by lupus or that my body has not recovered from my winter illnesses. A nearly 80 year old body is just not as resilient as a younger one. Lupus and fatigue go hand in hand and that is something that all the lupers I know struggle with. Controlling lupus is the key so if you feel it is active and you are not on suppression meds maybe you should be. Hope this helps.
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 2152
   Posted 8/9/2018 4:20 PM (GMT -6)   
It sounds like you have gone downhill. I would make an appointment to see your Rhumy and see what he has to say about it. How old are you and what Meds are you taking.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 8/9/2018 4:53 PM (GMT -6)   
As mentioned in my post I have already seen the whole list of my docs and been tested for many different things. No red flags. I am nearing 80 but I do not believe that age is what is causing the problem nor do my docs. Despite my many problems (not all listed here) my body has been resilient and I would expect any recoveries to take longer now so I am hopeful that in time I will be ok. Not on any suppression meds and my other meds are not new so it is not meds. That is easy to figure out.
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 2152
   Posted 8/9/2018 7:45 PM (GMT -6)   
Bdimr..my reply was directed to the OP and not to you. No offence but you seem to have taken over this thread.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!

hanginin
Regular Member


Date Joined Jun 2008
Total Posts : 59
   Posted 8/12/2018 10:02 PM (GMT -6)   
Hi I am 56 years yong. I am on 7.5 mg prednisone daily, I have Addison’s disease so it is a replacement dose. Also florineff for electrolytes as the adrenal gland also regulates minerals.
I take thyroid medication for hypothyroid. And ompersole for tummy protection, I have a motility problem.

So really not much meds. But I am not good at meds.
Methotrexate bothered my liver so I was taken off.
Could not tolerate plaquenil either.

I think it is time to try something else but what?
I tried IVIG and had a life threatening allergic attack while getting it.
I did a month of rituxan for idiopathic thrombocytopenia pupura. I think that is immunotherapy.
It worked well, my platelets that we’re near zero for a year have since stayed at 450+

It seems the only med that I feel better on is higher doses of pred....but it is not a nice drug and my bones
have paid the price

I also deal with fibro I think it might be the cause of at least the fatigue.
I have Lyrica for it, also not a nice drug but I use it when I must.
I have also used baclofen for stiffness and pain it is okay but causes dreadful night terrors.
Then I have my Tylenol 3 that I can use when I need to rest and can’t for pain.

So I think we need to consider something else maybe immunotherapy?
What do you all use?
I am no quitter and I take one day at a time and enjoy everything in it, just wish I could do allot more
than I seem to be able to do now.
Thanks, tuffymason

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 2152
   Posted 8/16/2018 12:15 PM (GMT -6)   
Hi, well I'm no doctor, perhaps you could try azathioprine? I dunno, this is why you need to speak with your doc. I am taking Plaquenil at the moment for Lupus and Humira for Ulcerative colitis.

I won't touch prednisone again, even though just a small amount every day would make me more feel better...its a terrible drug and in my opinion should only be used in emergencies.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!
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