I just want to be myself again

General Support
1

since i am here, and i mean this place, just reading about other peoples problems, pains, moments of happiness, made me feel good because i know i am not alone.

i did not want to complaint about my condition, but i just feel like alien, from some weird planet. and the only reason is that my psa is driving me crazy since mid october. summer was amazing, sun, swimming pool, more sun...and now this is gone and i am in pain, tired...i am limping when i walk. and i hate people looking at me. i am not handicapped. i hate stupid comments like "you are too young to be sick". of course i am too young to be sick! however, this condition does not discriminate. so, i am here, feeling bad and trying to fix it.

last thursday i saw my doc. we spoke. mostly i complaint, and he listed. and then he gave me homework for next 3 months: report on my diet, report on my water exercises and he wants to see 10 pounds less of me during the next appointment. ok, i did gain few extras. i do know i have to exercise. and i do know i have to eat better (lately i am wolfing down the food, i believe this has to do something with winter. apparently fat is good to keep body warm).

i am trying to convince myself to move (literally) my butt from the sofa.

and i can't...i am tired...

i don't sleep very well, i wake up tired, take shower, go to work, come home tired, eat dinner, sit, go to sleep tired...help

i am tired to feel tired.

so i decided to made it public. i have 3 months to put myself in the game. every day will be new start. every day will be the first day of doing something. today, saturday, i had my coffee, breakfast, pills, and now i am writing. later i plan to do some moving. unfortunately i can't do my favorite thing: walking, because my feet is in pain after just about 2 hours of walking, so i have to find different activity. i like to swim. i will do swimming :) oh, i will have something light and green for lunch. and i have to do research about food that help with inflammation. i am allergic to nsaids, so pain meds are out. acetaminophen is not helping much, so i don't take it.

well, i guess this is a plan. wish me luck :)

2

Good plan! Believe it or not moving your butt when you don't want to gets easier and you always feel better when you do your homework.

I just want to remind you of one thing. YOU ARE STILL YOURSELF. Don't let anyone including YOU even hint at anything else. Butts are also for kicking.

I'll wish you luck because you asked for it. BUT you don't don't need it. You know what you need to do. That's the hardest part.

3

tntlamb, you made me cry :) thank you

4

sybil, thank you for your support :) i started slowly on the recovery road. for now it is more fruits and vegies, ginger tea, more water and much less sugar. since i don't drink soda or any kind of juice i am not worry for the additional problems related to that. as for exercising, still in progress of convincing myself it is good for me :) i am still tired, but over the years i learned to listen to my body, so now i just do as much as possible and then i just take break. thank you again. i do feel more positive :)

5

Awh I completely feel your pain. I am in the same boat. You are inspiring.i am going to exercise today with you :slight_smile:

6

Tiger girl, this is one big boat to hold all of us! LOL While you drink water, ginger tea (and a few tomato-based drinks, LOL) I’ll cheer you on! I’m hurtin’ today, but I’ll do what I can, my friends! :slight_smile:

7

:frowning: I’m sorry. Is it all over blachiness or more specific? The holidays bum me out because everyone is so excited but I think of it as a time when I have so many demands on my body that I just feel run down and hurt. I have been on te sofa for four days and I have a day where I am finally feeling “good.” I will not overdo it. I will not overdo it. I will not overdo it.

PS - I don’t have leg cramps but my mom swears by the soap and pickle juice (I think it’s actually the vinegar in it?)

PSS non virgin Bloody Mary’s might make you forget you have leg cramps but she is a t-totaller - and they are a no no for anyone on mtx :wink:

8

Oh no, not all over blackness, Tigergirl! My feet are so painful, and of course you know what they say: when your feet hurt … yep, everything hurts. That, and hearing the surgeon say yesterday that basically nothing could be done for me has put me in a bit of a funk. I’ll get over it.
Have I ever mentioned how much I hate this disease? ROFL ow ow that hurts too. And now I can’t get up.

9

i had my first real ginger tea yesterday night. i bought ginger (wasn't even sure it was ginger before speaking to clerk :)), took it home, looked at it for few, chopped it and boiled it for about 10 minutes. and then there was show time: i had a cup with lemon and honey. ginger is spicy! why i did not know that? so, i had my cup, it tasted kind of weird, spicy of course, but i did drink a full cup. plan to repeat the exercise :) as for THE exercise, well, in progress of convincing myself. actually, since i am running after my dogs, and considering that my black lab is 95 lb and my baby husky is about 70 lb, i think i am exercising.

apropos the leg cramps...lately i have this small unpleasant problem, specially during the nights. it is normal? i never paid attention to this until tiger girl mentioned it.

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forgot to mention: thank you all for your support :)

11

Leg crrrrrrrammmmppppps, omg yes. I had terrible ones, always at night so they woke me up, and I got relief by taking a magnesium supplement. Haven’t had them for ages, thank goodness!

You’re welcome, BA13! <3

12

I love the support happening in this thread! <3

So many wise words, I'm not sure i have anything to add. Magnesium before bed for leg cramps. Potassium could help as well. I can't sleep if I don't take Magnesium before bed because I either have restless legs or get cramps.

One of the things that can be challenging is getting moving and getting adequate exercise when you have painful feet. For me, if I can't be on my feet, I do what I can with my upper body to get moving. My neighbors must think I'm nuts (and I'm not denying I am LOL) because I will have races with my kids in the street in my wheelchair (we live at the end of a dead end road). Sometimes balancing upper body and core exercises with lower body exercise can help a great deal to reduce any one area getting overworked.

13

i feel like everything is falling apart for me. ok, i am a little over dramatic. its march, i did not improve myself, i got worse.

well, all this started with the pain in my foot getting so bad that i was forced to get a cane. then a moment of enlightenment: stop wearing shoes. and i did. now i am walking around in my gray sleepers, even to my job in an office. and with my clients to immigration office. yeah...sometimes i am still limping, and of course i am stiff and in annoying pain without possibility of getting rid of it (allergic to meds - nsaids). i had an appointment with my reumathologist and unfortunately our relationship got to the point that we don't work together. he is not listening to me. my other doc did nerves test and apparently it is not my foot but my back nerves that are damaged. x-ray did not show anything, so this wednesday i have mri. will see then. for now i did some research and it seems like sciatica. because of all this together, because of PSA, i asked my boss if i could go part time in my job for 6 months. i am just tired and working full time is not giving me break to take care of myself. i spoke to my reumy and he said he will not authorize this. i tried to explain, he did not listen...i left crying. however, my primary doc was so nice and compassionate, he is working with me on this. so, i am starting part time in 1 week. also there is a plan for my physical and aquatic therapy, 5 day per week, supervise by my primary doc. and i just find new reumathologist. i want to be ok. i am trying to have normal life, but my condition is not helping. i just hope that the therapy and my new medical team will be able to help.

i hate being cry baby :)

14

Repeat after me! I AM NOT A CRY BABY!

You seriously need a new Rheumatologist, and glad to hear your primary doc is good for you.
Cut yourself some slack, you’ve pushed yourself to the brink trying to work and run a family, whilst PsA is making that near impossible especially without NSAIDs and in addition; a crappy Rheumatologist who makes you feel like crap.
Sending you a hug xx

15

i can say that finally i know where i am standing (kind of). my rheumy diagnosed me with fibromyalgia. now i am on generic cymbolta (?) and feel much better. well, my head :) as for the pain, it is still with me, of course walking around my body, but is not that bad as few weeks ago. it's been 6 weeks on the new meds. side effects are pain the you know what: sleeping problems. so my doc put me on additional meds - muscle relaxer. we'll see how it will work. i just need to sleep.

fibro is weird condition. and i don't know what is worst, psa or fibro. i am still tired, still in pain, plus the fibro fog...i was having this rare symptoms for so long and i always thought that my depression is the guilty party here, however this is a condition that i did not even know about. i did hear ppl mentioned it, but never took time to check it, and now i have to live with it. life sucks sometimes.

well, i just hope to get better with the therapy and swimming.

16

Hugs! It sounds like the fibromyalgia diagnosis came as quite a shock. Be gentle with yourself and give yourself time to wrap your mind around all of this. It’s quite a lot to take in all at once. It sounds like you’re on the right path to treat both your PsA and fibro. Do you take or do anything for pain management? A friend of mine with fibro has found great relief working with a pain management specialist.

17

hi Anna

thank you for the suggestion. i will check it.

as for exercising, i am currently in physical therapy. unfortunately i was diagnosed with fibromyalgia few weeks ago, like psa alone is not enough :) it is challenging. as for walking, i am so happy, because i can actually walk for about 2 to 3 hours without pain. of course, i have to walk slowly, but this is amazing progress for me. and since i am on generic cymbolta (?) i actually lost 4 lb without even trying. i did not know i lost weigh, but when i put on my pants, there were very loose and i just weight myself and surprise, 4 lb gone. i am trying to eat healthy, because lately i feel cravings for huge amounts of coffee. my daily intake was about 6 cups, so i decided to just keep eye on this. now it is just 3 cups, progress :)

again, thank you, and i will look it up. any additional help from food is more than welcome.

Anna said:

May I suggest, since you want to loose those pounds anyway, the nutritarian diet by Dr Fuhrman? I started it over a year ago, not really for my arthritis, but because it made sense to me for my general health. Http://drfuhrman.com

Now here is the kicker. I truly wasn't expecting it and was very surprised when it happened. It gave me lots of energy! Did zip for arthritis, but OK, I wasn't expecting it anyway. And yes, I lost weight.

See if you can get some small exercise sessions in. People with arthritis are better off metering it out a bit. You can walk for 15 minutes several times a day. It adds up. You will get more energy once you get going!

Best of luck!
18

hi Nym

sorry it took me for ever to write. i am on generic cymbolta (?). its been about 8 weeks and the pain is not so bad anymore. i am functional. can walk for about 2 to 3 hours, slowly, but something is something. also i am in physical therapy. the best thing is that psa is still in remission, fibro is not driving me crazy, but the fibro fog is making my life impossible. my brain most of the time is "out of order".

the truth is i did not expect to have this condition. i guess nobody "expect" to have any diseases. so i am trying to to do the best i can to be myself. this is not easy, it is very slow process, but i promise myself that i will get my life back :)

nym said:

Hugs! It sounds like the fibromyalgia diagnosis came as quite a shock. Be gentle with yourself and give yourself time to wrap your mind around all of this. It's quite a lot to take in all at once. It sounds like you're on the right path to treat both your PsA and fibro. Do you take or do anything for pain management? A friend of mine with fibro has found great relief working with a pain management specialist.
19

Just checking in to see how you are doing with finding a new rhuematologist. This is going to be the biggest help for you. I know when I was facing docs who were jerks or didn't care to find out what was wrong with me, it made my life that much more difficult.

The fibro diagnosis can actually be a good thing. Most patients respond well to one of the available meds, and feel much better. You may find, after treatment, that a lot of your pain goes away, and the joint pain that remains is so much easier to cope with than the fibro fog and pain. Don't let the fog go on. If cymbalta is working well for the pain, maybe there is a better drug for treating the brain fog? Keep pushing for something better, because you don't have to live like that.

You are still you, granted, you are now version 2.0, but you are still the same person. It may be surprising, but, I grieved so deeply when I was diagnosed with the PsA best a few years ago. I was sure that I would never be the same person again, and it was impossible to see how things could ever get better, but I DID get better. It took a long time to get physically better, but i got emotionally better first. Being hit with a chronic disease is a huge loss, and we need some time to grieve for the loss of "self", but after you have finished with that, it's time to yank yourself up by your bootstraps and figure out how to LIVE again and to define a NEW self. It sounds like you are in the midst of this new discovery and that is so COOL! If you need anything, let me know!