Hello All,
I get up each day the same way. I take my purple pill(omeprazole)then my levothyroxine, and provigal. The provigal is for fatigue.
By the time I finish making coffee for the day I feel like I have hit rock bottom. I am so tired and so fatigued, and it's been this way for the past year.
I spend more and more time taking rests/naps in the bed. I feel like I have little life. I love my dear husband, and all my little fur babies, but I feel like I just exist through the day.
I had to cancel my Endocrinologist appointment this week due to the weather which is been rough this year. I was so disappointed since he took tests and I kept hoping he would have something to help me. I have rescheduled, and it won't be soon enough for me.(In two weeks)
I am so sorry to complain, but I am going through one of those periods of feeling so frustrated. Nothing new on here I know my dear sjogren's family.
Some of you remember me talking about sewing and quilting with a group on the net, but this month I told them I couldn't be involved right now, because I am not up to meeting any deadlines. So I don't have the energy at this time to do even something that I found enjoyable and creative.
Something strange I now notice when picking out fabric to sew. Something that looks very very patterned I can't focus on. It feels like it makes me literally sick. Isn't that strange? It's like the patterns in the fabric or quilt pattern has to have so me order to it or I can't deal with it.
Thank you for listening
susanep
HUGS.
Do you think the Provigal might be causing the vision issues?
The Provigil was my first thought when you mentioned vision difficulties. Please call your doctor about that - he or she may tell you to stop taking it until you can be seen. Vision problems with Provigil are nothing to mess with.
Take care,
Genko
I didn't know any problems like that with the provigal. Thanks everyone. I will bring it up.
susanep :)
Sorry you're struggling so much right now Susanep :( I'm not familiar with any of the meds you are taking but I am struggling with lots of eye and balance issues right now - and some visual patterns really impact me. Sometimes I have to look away because some patterns (e.g. on TV, computer monitor, walking down a hall or street - and once just looking at a patterned blanket) makes me dizzy and/or hurts my eyes (an immediate intense ache). I have no idea what the cause is, but thought I'd put this out there in case it's not the meds causing your problems.
Susnap-sorry to hear your feeling this way.
I had been feeling like you with the overwhelming fatigue for several months. I notice you are hypothyroid. As part of a regularly scheduled blood work up I had my thyroid levels tested as I've had hypothyroidism for 15+ years. I was slightly hypo and had my synthroid increased.
What an amazing difference I've felt. More energy, less brain fog, and just more engaged in life. I've never had such a difference before so I didn't suspect that my thyroid was the major cause.
I hope your endo will have tested your thyroid levels. And if you're hypo you may find great improvement.
As an aside - no one ever told me until now that you can't take synthroid within 4 hrs of having dairy. I always have a lot of dairy at breakfast and took my pill the recommended first thing on getting up. I changed the time to mid-night. I think that made a huge difference too.
Susan, sorry you are feeling so lousy. Unrelenting fatigue is awful. One thing I noticed is you take your thyroid meds with other meds. I was told it needed to be taken first thing in the morning, alone on empty stomach to get maximum absorption. If your thyroid is out of whack this could lead to fatigue and depression.
Take care.
Anna
Susan, I am so sorry that you are going through this extreme fatigue.
I have trouble with busy patterns or other things that are visually overwhelming, such as a shopping mall or the white board + bulletin board + assignments + announcements + motivational posters, etc that make up the walls of a classroom. In my case, I think it is some sort of sensory processing issue because I have always been like that. It makes me dizzy and overwhelmed. What I have learned to do is tune out visual "noise" by finding and focusing just on what I need to see. I literally try not to focus on anything else. If I don't let my eyes focus on it it just becomes a background blur that is not problematic. On the other hand, I enjoy art and photography with good composition that leads your eye through the piece. I'm not sure if this is helpful to you but I hope it is. At least you have a good way to narrow down your fabric choices, now! Seriously, I hope that you can sort this out and get back to quilting and doing the other things you love.
Hi susanp,
I would suggest that you ask for a moderate dose of prednisone or medrol.
It is the inflammation that makes us tired, gives us pain, depression and other symptoms.
You need an anti inflammatory.
I'm not a doctor of course, and for all of us 'our mileage may vary': we have unusual reactions to medications.
But, I have energy because I take a low dose of medrol daily.
Hugs, Elaine
Susan, Has the doctor ever tested you for Hashimotos or autoimmune thyroid disease. This can add to the fatigue factor. The test is a blood test called antithyroperoxidase and I am of the opinion that all people with thyroid issues should have this checked periodically.
Also, if a change in your thyroid med doesn't improve your energy there are other meds besides the Provigil for the fatigue. I hope that they can fix this for you so your life is better---summer is coming and one hates to be napping through the whole thing. Good luck Irish
Is the medrol the same as like prednisone? I have weight I need to lose also , will it hurt any worse if I ask for a moderate dose of medrol? I am soon to see my Rhuemy, and also my endo that has tests results back. I think it shows I have the low cortisol, and something else high.
I will update as I find out these things.
susanep-Thanks everyone.
Hi Susan,
Me too!! AND..I am on 5mg prednisone now. As of about two weeks ago. The rheumy said "at your age"...you can hear the proverbial death knell! You don't say your age...I am 72. I am a bit more receptive of the slow down...as I worked thru November of 2013.
Medrol packs are different from prednisone. Some people are Rxed prednisone in quantities to taper later. I have zero idea how long my doctor wants me to stay on it. She put me on it along with plaquenil to replace Celebrex. (I have had one NSAID ulcer.) I must say, I think I feel better overall..but my knees are creaking immeasurably. (and my nagging hip hurts more continuously) I cannot take the burst part of the Medrol any longer. Terrible, blinding headaches the first 3 days...then it will subside. This is the alternative steroid treatment for me at this point in time.
I do know prednisone is the treatment of choice for inflammation of the body such as is present in SjS. It was initially given to me to take when I had flares of costochondritis. The current protocol is new ...and might I say scary. As stated, we did not discuss length of time. I questioned the fact I have one osteoporotic hip...pretty bad. That is my fear...further bone deterioration. (I am on daily calcium supplements plus Fosamax.) As to weight gain, I remember vividly my appetite when on Medrol packs. Now I can't eat that much...so one cancels the other. :-\
Good luck and post the test findings...and your age. I mean, are you around 50, younger, OR....older??
c3
I am 61.
susanep
I agree on every day is a miracle! The fatigue is hard to explain to many who can't understand!
I am 70 and experiencing quite a bout these past few weeks. I normally was feeling pretty good until these past few months. We have to keep going!
Susan,
I'm sorry to hear this. I had a similar year (+/-) where I couldn't function. I was so tired I didn't want to talk on the phone even. I conserved every step for the absolute necessary trips to the bathroom, etc. My house deteriorated and I still haven't caught up (and am learning not to care).
About six months ago my rheumy put me on 5mg of prednisone twice daily. It helped within a few days. I've tapered off to half of that now. I can't seem to do without it completely as I've tried. But life is so much better.
I agree with Elaine -- it's the inflammation and the prednisone addressed that.
Sending hugs and hoping you get some help soon.
Marie