So, I'm ready to throw myself off a cliff. Had (yet another) doc. appt. today..for an overnight sleep study consult. I was sure I'd gained some weight ( maybe 10lbs)....cuz my clothes all still fit, but I've definitely developed a Moonface and my upper arms are a bit larger. I'VE GAINED 47lbs since mud-Aug!! I feel ugly and HIDEOUS and sooo out of control of my life! weight gain, emotional basket case, nausea, headaches, upcoming surgery, panic attacks, anxiety, profuse sweating" compression fractures, on and on and on!! I no longer know what's PMR or prednisone, no longer know up from down....I'm a "hot mess" and don't know what to do any longer. I'm going to try to get some type of therapy appt tomorrow! The past 6mo have been life altering for me...I'm not the same person... My question for anyone on this forum is...did you ever get to the point where you wondered if you'd ever get yourself back again...were you ever, just tired??
Oh dear, Lynda, I feel so sad for you, you have really been through it and still are.
i also wonder if I will ever be the same again.
I don’t have any advise for you, just a great big hug!
Hi Lynda
I sure do ! my GP contacted me to go and see him, my answer was ‘what for ?’ have you got a magic cure yet ? I am not going to see any of them unless I want to.
I am not the same, I just want to get off this ■■■■ and get on with my life 7mg and counting 7 weeks to go ! YEAH!!!
I’ll take that hug margot…I can really use it right now! I’m sooo sorry if I sound like I’m “wallowing” right now…that’s just where I’m at.
I’m kinda bracing for the backlash…“at least you’re not dying, it could be worse” etc, nonetheless, I’m in pain right now…as I said, I feel so outta control of my life
thank you for your kind words and understanding…
Yes, I have been depressed many times, but, I have put my trust in Jesus to get me through this terrible nightmare and He has done that for 14 months. When I start to get depressed I pray with all my heart. I will pray for you too.
You just made me laugh _OUT LOUD!)
You sound Angry and like you’ve just HAD it! I wish I were in that frame of mind…it’s easier to deal with things…but alas, I’m just sad and VERY tired…maybe tomorrow I’ll be angry!
Hi, Lynda,
Have had a lot of what you’re experiencing. Have had several surgeries since being diagnosed with PMR. Not done yet, but moon face is decreasing as I lower the Prednisone - down to 5 mg now. Lots less bruising. My biggest complaint now is lack of energy. Have gotten so much from this group about being kind and accepting of myself. Some days, all I can do is stare at the TV. Other days, I can put in 4-6 hours at work. I used to be the Energizer Bunny. Things have changed. I’m also getting older (71) and not sure what’s normal aging and what’s the PMR. So, one day at a time. Best wishes.
Dear Lynda,
You are about to get a little lecture because I CARE about you making it through this and you can still find ways to enjoy life . (I would put a big smiley face and a hug here if I knew how).
The first year of any deterioration is always the hardest…accepting then readjusting . It is not good, but we are still alive ! I lost a friend unexpectedly 2 weeks ago. It was yet another reminder for me, that I am still here to smell the roses.
Once I accepted this new little bumpy road in life, I then put lots of thought into what I would get most enjoyment out of in a slower paced life, so that I could take my mind of my new aches and pains. I have always been a dreamer, so that came easy for me. I told myself that ‘life’ was letting me slow down for a couple of years or more, so what new things would I do to enjoy and treat myself a little every day. Think back to your childhood…what did you love to do, what did you want to try ? Give something new a go.
Ok, 47lbs is a pain in the butt. I took my eyes off the scales when I broke an ankle. Willpower to do something about weight has only just kicked in a couple of years later. Deal with that when you are ready.
Head space… now that has to be dealt with. I had to resort to anti depressants after suffering for a few years with Fibromyalgia. I would not have had the motivation to push myself without them. I did not have panic attacks and anxiety tho. Get some professional help for that. Be kind to yourself.
Profuse sweating… most undesirable…I just resorted to buying myself a hippy head band… now some people can get away with things like that and look wonderful…I look more like grannie gone mad !..but it stops the sweat rolling down into my eyes and fogging up my glasses. Lol (lots o laughs)
And at my lowest, I use and recommend your Oprahs, Gratitude diary. Start every day writing down three things that you are extremely grateful for. I am so grateful for Oprah… it works wonders for me.
Learn to stop and smell the roses again, or what ever you loved to do when you were little.
P.S. …Im not getting reply notifications yet, so I have to sort myself out here. I am a bit concerned that I might miss a reply. …that needs answering. It will just b me in a confused state.
Hi lynda, i have read all the replies given to you , and cannot add a lot more.
but understand when i firsttarted i had a hubby who does not understand pmr and have to cope alone even now. all my friends thinkbecause i look well theres nothing wrong with me , even when i can hardly walk, i have a daughter in law who thinks i m a pain , and walks fifty paces in front, god help her if shes gets this then she will know, so we just get on with it, i cannot get below nine now even after four and half years i am struggling.
tell you what this new programme has give n me something new to think about its useless. there thats my moan, you take care as somebody said if i could a smiley would be sent to you instead a big hug and kisses xxxx
HI Lynda
I send you Lots of hugs and my wish for you would be that you get a lot better than you are right now, very soon.
Even though we have all got similar issues, no one has your personal pain nor do they know what you are actually going through.
The last thing you want to hear is “at least your still alive etc” that is extremely insensitive.
you need to be heard and to be cared about.
I have suffered from depression for many years now and its under control, I’m not a doctor but my guess is you are suffering from depression, please go to the doctor and talk to him / her about your feelings not just your pain.
you have lost yourself for now but you will get better I know you will.
the weight is a problem but you can do something there.
I don’t know if you like sugar but if you do cut it out for 2 weeks and see how you go.
Hang in there we are all supporting you .
Vicki
hey flutterbie…when I first read ‘lecture’ I must confess, I “cringed” just a bit! however, your lecture was very mild, so, thank you 4 that!
First let me say, I LOVE me some Oprah!! Super Soul Sunday is a favorite of mine!
and yes, I’m struggling to find the right anti-depressant for me (another pain, as it takes weeks to find out if one works or not, and then start all over again!)
I don’t drink (well, an occasional pina colada or Irish coffee)…but I DO have a good friend who’s a recovering alcoholic.
to take a page from her book…One Day At A Time!
for now, that’s how it has to be!
thanks Margaret…I appreciate the hugs/kisses!
God help your daughter-in-law if you ever catch up to her!!
thank you Vicki for your VERY sensitive reply! it made me cry…but that’s ok, your words were Very compassionate.
I think you’re right…I have kinda lost myself for the time being…the past several months have just overwhelmed me!!
But, I’ll “get it together” sooner or later and ‘find’ myself once again.
I need to take my own advice and keep swimming, swimming, swimming🏊.
oh yes where did that energizer bunny hop off to. fatigue and dizziness might be the biggest hurdle to deal with. some days are useless others not so bad. just came through 5 days of heavy fatigue. I do what i can and leave the rest. Husband very supportive so I am lucky. Friends too…and the fact that we look ‘well’ on the outside is a downer cause from my side of the guerney…not so good but how do you express it and not sound like coplaining or see the eyes roll back in their head???
Hold on to your faith in yourself and strive for a better tomorrow even if it takes more than a week to find one. Hugs and best wishes to all with PMR and GCA or any other debilitating situation, health, mental physical, home situation etc. comes in many forms. 
Hi lynda62707
Only just happened on your post. Wow! this site has gone cuckoo…bit like me when i was on pred. I know exactly how you feel! I have gone through some adversity in my life but my pred days takes the biscuit. I didn’t know whether i was going to make it, really! i felt i had lost the plot on many occasions. With all the side effects attacking me one after the other i was left weak with no fight left. Then one day i began to fight back. I took the bull by the horns and said right i’m getting of this horrific medication, and i thanked God i did not have GCA or i could not have got off pred as quick as i did. I told my rheumy that i was tapering off them and he said it was ok and to taper by 1mg a month. Even though i was drained, tired and weak mentally and physically i got off them albeit with many setbacks and bumps in the road I MADE IT!..and you can do it to lynda with help and support from rheumy and doctor and the forum. My help came from my rheumy, doctor, family and another forum member not on the forum now. Give yourself time and pace yourself. As previously mentioned by another reply do things you used to enjoy. Keep reminding yourself you will eventually be off pred. I used to visualise myself a year ahead with a normal face and just being myself again. I never thought, when in the middle of all the pred upheaval, that i would be talking and giving advice to another pred patient about getting off pred as i am talking with you now. Believe in yourself, take courage and you will get there… sending loadsaluv and loving thoughts your way lynda…ciao for now:flexed_biceps:
Pina Cola is my favourite. I try at least one in every country I go to. I dont know about Super Soul Sunday, I will go look it up.
please do take a look at super soul sunday…it’s a weekly one on one interview Oprah does w/ an author (usually) who’s always got words of wisdom and is very inspirational!
on every Sunday.
WOW…pina coladas in every country…how lucky are you??!
I was born in San Francisco,Ca and have only been out of this STATE 3x!!!
At the top right of my screen is a pair of blue click points - one for messages (Inbox) and one saying notifications - click on that and it brings up a list of all posts you haven’t read. You can always navigate new replies from that.
I’m not the same person. I’d like to think I’m a better, more compassionate person but I’m not the one who can judge that. If nothing else, PMR has taught me patience. I learned a lot about how to care for aging bones without using medication. This might not have happened without PMR/pred and I might have ended up with serious osteoporosis because, who knows, maybe my “low bone mass” predated pred?