I thought maybe I was having a flare and emailed my rheumatologist last week about increased joint and muscle pain and greater fatigue.
Then I heard nothing so I called his nurse and left a message this Weds. and Thurs. She called back this afternoon and said he doesn't consider this a flare and to just hang in there and keep doing what I am doing.
That isn't working.
I saw my PCP last week and asked to start PT which is making more stuff hurt but I am sticking with it. I saw him again today and discussed my pain issues and fatigue and he thought it could be Sjogren's but no one is willing to try prednisone.
I take a Tramadol (50 mg) almost daily for pain along with some Gabapentin in the afternoon as long as I don't have to drive anywhere for appointments. I take more Gabapentin at night. I can't do NSAIDs because of gastric bypass. I use Tylenol once in a while.
I stretch, use essential oils, and Tiger Balm, and hot or cold packs. I get massages every week and a half and my muscles are so tight and sore in my low back and glutes.
My low back always hurts, knees, fingers, elbows, neck, hip, etc. I try to move with extremely low-impact moves for about a half hour a day, cut down from an hour because I am in so much discomfort.
Any advice?
Thanks,
B
HI Again Brooks,
My flares: Profound fatigue (stare into space)
Lots of Pain (I have osteo arthritis, neck, hands, knees, feet)
Depression ( the world is terrible and will never get better)(
Itching and burning and tingling skin (face, hands, arms - this is my small fiber neuropathy).
That's about it.
I take more antidepressant. I take Benadryl (both for itching and burning and to sleep).
I take whatever I can for pain which isn't much.
I sit in bed and try not to feel sorry for myself, but it 'ain't easy".
This can go on and on for up to 15 days. I cancel out of everything and just keep staring onto space.
This is my version of a flare.
Hugs, Elaine
PS I don't have gastric things, THANKS BE TO GOD.
Keep pushing. You have to sometimes "get after" the doctors to help you. At times I wish the dr's could be us for 30 seconds and maybe they would understand better.
To be honest, I am not really sure about "flares". I consider my flares to be when I am overly fatigued and can't really figure out a reason for it. Usually I can feel it coming on. BUT, I was very tired one Monday at work - much more than usualy "nodding" so I took the next day off and slept most of the day. That took care of it. I don't know the reason for it so I attribute it to Sjogrens. I hope I can sense it coming next time.
Hi brooks
My flare ups are
Extreme fatigue (like blood is made from lead) even lying down hurts,
Glands all up
Eyes feel as if they are burning
Throbbing in my joints- mainly my hip
Skin feels bruised, hurts even to touch
Pressure in head
Concentration is a major problem, can't think or remember much
Anger (at not being able to do what I need to)
Despair (when the anger subsides)
I look like I m 100! All my skin looks so dehydrated so I look ancient
Hair falls out (that's normally my first sign it's coming on - I she'd hair everywhere!)
I find after years of fighting it - the best thing is to give into it and attempt to enjoy it as down time (which is near impossible with 3 children and a business to run on my own) but if I get the opportunity to grab a nap I do- I go to bed early, meditate when I can and do as little as possible....this makes it pass quicker than when I put my stubborn head on and try to fight it! I also increase my water intake to almost double....
Good luck
L x
Thanks everyone. I feel like I struggled so much in the past year and was out of work for so long and then I finally got some new diagnoses but that doesn't seem to be helping.... LOL
I am resting a lot and doing what I can.
Thanks again,
B
Dearest Brooks, you are doing what you can.
That's what we all do. A certain acceptance begins to set in...it isn't giving up, it is learning what works and what doesn't.
It isn't what was normal in the past....it is 'our new normal' and it works ok. we pace ourselves, we deal with 'flares' when they occur.
I have actually Googled the symptoms of a flare and gotten MY OWN POSTS here on Sjogren's World from two years earlier! The same symptoms and same questions, and ME asking the same questions.
It really makes me realize how long I've been dealing with this, and how often I experience the same old things. Now I keep a diary (since I've been getting IVIG). It helps.
But it is way weird to Google and get your own posts.
Hugs, Elaine
Extreme fatigue
extreme dry eyes and mouth
achy body
and everyone say I look pale and sick
Ive been getting the pale and sick a lot lately
From my diary (mid-May - mid-Nov 2013) - the following was in addition to ongoing dryness and itch issues:
*Sides of neck - stiff and painful
*Lower ribcage - painful, especially to any pressure
*Posterior neck - intermittent weakness, especially when chewing food
*Upper back, neck, shoulders, collar bone - tight and aching
*Armpits - felt swollen and VERY painful to the touch (had an ultrasound - no lumps; nothing unusual)
*Arms and legs - shooting/stabbing pains, and points tender to the touch (very painful)
*Hands and fingers - 'felt' swollen, achy, intermittent sharp shooting pains
*Shoulders, arms, hands, fingers - pins and needles feelings that were especially severe at night
*Muscles - very frequent, random fluttering of muscles throughout my body, but especially in my arms and legs
*Legs - felt wobbly/uncertain/stiff/mechanical. I did not trip or fall but was VERY conscious of leg movement and foot placement while walking
*Tremors - both arms and neck/head. Very severe but only occurred 3 times and were obviously linked to cold weather exposure. These three events were shocking, fascinating - and frightening.
*Sense of internal vibration (High frequency type of vibration felt throughout my entire body.)
*Sinus congestion - ongoing, treated for 2 sinus infections
*Headache - daily
*Eyes muscles(?) - pain when I moved my eyes
*Fatigue - ongoing, varying in intensity from 'bad' to 'extremely bad'. I barely had the energy to move, slept long hours whenever possible. In retrospect - I can't believe I kept going to work through that period. (Except 2 weeks off when I was diagnosed with pneumonia.)
*Nausea - intermittent (lost 10 pounds without trying)
*Bronchitis - Treated with meds
*Pneumonia - Treated with meds
Like I spent the whole day at six flag and have the flu without a cough. Strange sharp pains out of nowhere that hit anywhere. (being hit by little lightening bolts at six flags)