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LisaT
05-25-2014, 03:48 AM
Help! Any new or recurring symptom makes me so anxious right now... Having a rough day and a hard time distinguishing between feeling worse because of an actual physical symptom or symptoms, and anxiety making things feel worse. My dog just vigorously scratched herself while sitting on my bed with me and I thought we were having an earthquake. Any tips short of mind altering drugs to calm myself down and see whether the symptoms subside? I have a very low tolerance and a half an Ativan would knock me out for the rest of the day... I'm listening to my meditation cd but this far have been interrupted by fighting children etc., not sure whether it works this way. Having a good cry and even that doesn't seem to be helping yet. :ohmy:

Alysia
05-25-2014, 04:00 AM
Hey Lisa. I am sorry for posting about earthquake on fb. This was the only one, and it was light and far away from you.... it is natural to feel anxiety when you are a weggie.... you just need some good cry, sharing here, lots of hugs and the world will look happy and peaceful again... sending hugs .. no emoticon when using taptalk.....

Sent from my GT-I9100T using Tapatalk

LisaT
05-25-2014, 04:13 AM
Thanks Alysia, it's so not your fault! No need to censor yourself, it's really the illness causing my anxiety. I think about earthquakes even when big trucks shake the ground nearby. The meditation helped a bit. I wish we could plan these days for a more convenient time... Like when kids are at school. But maybe their fighting contributed to my anxiousness... Thanks for the hugs. To you too!:hug1:

MikeG-2012
05-25-2014, 04:56 AM
Help! Any new or recurring symptom makes me so anxious right now... Having a rough day and a hard time distinguishing between feeling worse because of an actual physical symptom or symptoms, and anxiety making things feel worse. My dog just vigorously scratched herself while sitting on my bed with me and I thought we were having an earthquake. Any tips short of mind altering drugs to calm myself down and see whether the symptoms subside? I have a very low tolerance and a half an Ativan would knock me out for the rest of the day... I'm listening to my meditation cd but this far have been interrupted by fighting children etc., not sure whether it works this way. Having a good cry and even that doesn't seem to be helping yet. :ohmy:

Lisa, I hope this is just med related. Prednisone did this to me when on higher doses. I'm a relatively calm, even tempered person, but when on pred any little thing would set me off into a raging fit. Then, I would cry because I know that is NOT me, but the pred, but there was nothing I could do about it.

Hang in there, and if it helps to vent here, we all totally understand!

pberggren1
05-25-2014, 07:18 AM
I found the higher doses of pred really messed up my thoughts and made me feel nervous and anxious. Once I got to lower doses or off it, it got much better and most of it went away.

LisaT
05-25-2014, 07:35 AM
I'm on a low dose... And somewhat anxious to begin with. I feel like it has to do with all of the uncertainty and lack of control. But if it is partly prednisone then maybe it will get better. Thanks for your insights.

MikeG-2012
05-25-2014, 09:51 AM
This is s stupid disease, but seeing on here that there are several people who have survived quite well with it for a lot of years, makes me quite optimistic that I can get there some day too. That gives me the drive I need to press on, even when things are not going so well, form one day to another.

If you are confident with your doctors and the treatment plan you have in place, you have a a lot going for you--that's half the battle!

windchime
05-25-2014, 11:58 AM
Lisa you have a lot to be anxious about right now. This is a normal feeling when there is so much uncertainty as there is with your diagnosis. Hopefully a lot of this will resolve itself when you get your ct results in a week or so. Unfortunately like others have said it's sometimes part of the disease process. Do you think it could have been your busy day combined with the kids fighting and the stress that pushed you over the top? I know that not having control or feeling like I don't have control gives me anxiety too. The meditation cd will help even if it's to only listen to the music. Deep cleansing breaths.

I hope things have calmed down by now and that you are enjoying a nice relaxing evening out with your friends. Here's to better days ahead. Hugs to you. :hug1:

annekat
05-25-2014, 01:34 PM
Lisa, I get anxious and jittery, too.... one of my cats meows too much and I can't help but shout "Shut up!" at her! I feel bad, because she means well, and usually try to comfort her afterwards, and she forgives me. Sometimes it just gets to be too much! At least I don't have kids to yell at.

LisaT
05-25-2014, 02:34 PM
This is s stupid disease, but seeing on here that there are several people who have survived quite well with it for a lot of years, makes me quite optimistic that I can get there some day too. That gives me the drive I need to press on, even when things are not going so well, form one day to another.

If you are confident with your doctors and the treatment plan you have in place, you have a a lot going for you--that's half the battle!

I'm not sure that I am, I think there are symptoms/issues not being addressed or followed up and am not sure they're offering the best treatment vs. following protocol to try the least expensive options first and offer others only if those fail. Must get to the bottom of it. But you're right, it definitely helps to see all the people on here who are able to manage and get into remission. Thanks for the reminder!

LisaT
05-25-2014, 02:44 PM
Lisa you have a lot to be anxious about right now. This is a normal feeling when there is so much uncertainty as there is with your diagnosis. Hopefully a lot of this will resolve itself when you get your ct results in a week or so. Unfortunately like others have said it's sometimes part of the disease process. Do you think it could have been your busy day combined with the kids fighting and the stress that pushed you over the top? I know that not having control or feeling like I don't have control gives me anxiety too. The meditation cd will help even if it's to only listen to the music. Deep cleansing breaths.
:hug1:
I hope things have calmed down by now and that you are enjoying a nice relaxing evening out with your friends. Here's to better days ahead. Hugs to you. :hug1:

And to you! I cancelled the dinner. I've cancelled on this friend so much I'm amazed she will still try, but she's very patient and understanding. I just couldn't do it. My busy day turned into hubby's extra busy day while I slept... Just one of those days that didn't go according to plan. The kids' fighting didn't help, but when I'm feeling relatively ok I can manage that with the usual tools--threats, bribes, yelling, physically separating them. When I feel too crummy I just can't do it. You're right, the uncertainty is definitely contributing to the anxiety. Tomorrow is a new day! I appreciate your support so much. I am amazed every day here...

Hope you had a good day! :hug1::hug1::hug1:

Alysia
05-25-2014, 03:11 PM
Sleep well, Lisa, tomorow is a new day. and you have us with you all the way to hold your hand.... :hug1:

LisaT
05-25-2014, 11:55 PM
Just FYI so nobody worries... I'm trying an experiment for today to see whether spending less time on iPad and other screens will help my headache. So if I'm not on most of today don't worry about me, I'm turning off the screen for a while. I've been so addicted I'm on here constantly and didn't want anyone to wonder why I'm not chiming in for a bit. Hope all are feeling as well and possible and have a good day! Let's see how long I can actually stay off my iPad. :rolleyes1:

windchime
05-26-2014, 12:41 AM
Glad to hear you are feeling somewhat better. Sorry about the headache they are soooo annoying. Good luck with turning off the electronics. I've tried it once or twice......Lol Hope you have a restful day. :biggrin1:

Alysia
05-26-2014, 01:04 AM
Lol.... welcome to the addicted club.... best on the globe..... I doubt that this is what caused the headaches but it is worth a try..... good luck and have a blessed day !

Sent from my GT-I9100T using Tapatalk

LisaT
05-26-2014, 11:11 AM
Lol.... welcome to the addicted club.... best on the globe..... I doubt that this is what caused the headaches but it is worth a try..... good luck and have a blessed day !

Sent from my GT-I9100T using Tapatalk


I don't think it causes the headaches but it doesn't help get rid of them. I didn't stay offline altogether, just spent less time… t feel a bit better now, it's just lurking in the background but I'm functioning again. Both my kids have a cold that I'm trying to avoid catching. I appreciate everyone's good wishes… Some of you are dealing with so much more.

windchime
05-26-2014, 12:10 PM
Feel the love surrounding you, filling your every pore with Gods love and healing energies.

Debbie C
05-26-2014, 01:23 PM
Lisa ,sorry I haven't chimmed in so much but I have read this thread and caught up on what's going on with you.Like everyone said this disease gives you a lot to me anxious about especially if you are not sure about the treatment you are getting. But treatment is the most important thing and if you are not happy with what the drs. are doing and the treatment your getting then you definitely need to look elsewhere
Also pred can be our best friend and our worst enemy,it makes us feel better but we can also have an attitude change in a minute. I used to do yoga a lot and the relaxed breathing calms you down but now I have been putting a ipod on and I go for a nice walk. I hope you find something that works for you but just think positive,things do get better:hug2:

Alysia
05-27-2014, 12:29 AM
headaches can be the starting of cold from the kids.... :sad: do you still have them today ? how long do you have them ? there are couple of threads about headaches around....
being on line (here !) can reduce headaches..... said the addicted user :wink1:

Geoff
05-27-2014, 01:28 AM
Hi Lisa, Sounds like you are riding the roller coaster at this moment and everything seems to be against you. Is there some underlying doubt in your mind about your treatment regime? Perhaps you could "clear the air" with your doctor?
I read that your pred doseage is low so that would make me think its not that. It seems as tho your children are giving you a hard time at present which of course cannot help. ANy thoughts on improving that situation??
As for myself, I did eventually get counselling from my hospital when I hit basement level and thought I was going to check out. It helped enormously and anything to help in that area, i.e your meditation cd is to be encouraged.
If all fails just get onto this forum and hang it all out there! Wishing you better times.

LisaT
05-31-2014, 07:09 AM
Thanks everyone for your responses! This seems as good a place as any to ask about another symptom... Numb tingly arms and hands... I've read a a lot of posts about this and it seems like neuropathy but I'm wondering whether that's just something to get checked out, or something urgent. I have a call in to my rheumatologist to see whether he thinks I need to be seen sooner rather than later. It felt better after massage a few days ago which made me think it was caused by muscle tension. But I don't want to ignore it if it could be a sign that Wegs isn't under control and u need more medication... Thanks... I have been wanting to catch up on others' posts but haven't had a chance bc every time I'm not busy with kids etc. I'm asleep. Hope to do so soon.

pberggren1
05-31-2014, 08:08 AM
It's most likely neuropathy. I had is mild a few years ago and most of it has gone away now. I still get it from time to time. I don't think it is anything urgent because from what I understand nothing can be done to help it.

Dirty Don
05-31-2014, 08:12 AM
As long as there's no pain nor loss of use, then it is most probably neuropathy. I had it pretty bad in both legs and feet, massage helped a lot, and now it's just in one foot. Phil is right, not much they can do about the actual neuropathy...for many it comes and goes. Nerves either regenerate on their own...or not. Way it is...

renidrag
05-31-2014, 08:41 AM
Neuropathy is one of the gifts WG gave me, mine didn't go away. In my feet and lower legs. I would encourage you to see the MD soon, though probably not urgent. In the beginning I would experience terrible anxiety attacks and had to go on meds. Xanax for a time, now I only take it when I can see my comfort zone becoming threatened, but no more than one a day. I would not be in remission if it wasn't for medications.
Dale

Dirty Don
05-31-2014, 10:43 AM
Most of us in remission would not be there w/o the drugs. Xanax is one of the great drugs of the world. While it can be addictive, depending on usage and the user's ability to 'hold the line', it can do so many things: anxiety, sleep, pain...and even golf...I shot 74 once on one dose of it...was VERY focused on the little white ball!

annekat
05-31-2014, 10:54 AM
Me, too, with the neuropathy, mainly in my legs and feet, has improved with treatment and is now mainly in my toes and a little in my fingers. The main time I notice it is when trying to fall asleep (of course) and I keep having to change my leg positions to see if it lessens. Eventually I give up and quit thinking about it and fall asleep. I've been sleeping well lately.

Alysia
05-31-2014, 08:30 PM
same for me, it comes and goes. the more I do exercises the more it disappeared. medical pedicure also helps a lot. also massage with creams.

LisaT
05-31-2014, 11:10 PM
It seems as though most of you have it in your legs and feet and it's less common in arms and hands. I notice when I can work out the muscle knots in my shoulders it seems to feel better, so it could be partly mechanical in any event I will run it by my rheumatologist when I hear back from him. The IME doc did a pretty thorough neurological exam and seemed impressed with my reflexes and strength so I'm not too worried, it just feels REALLY WEIRD.... :glare:

Alysia
06-01-2014, 12:25 AM
I have it a bit in my hands, in one - more then in the other. for diagnosis you need to go to a neurologist.

LisaT
06-01-2014, 12:54 AM
Another specialist to add to my list of referrals to ask for. Thanks! :thumbsup:

windchime
06-01-2014, 09:06 AM
It seems as though most of you have it in your legs and feet and it's less common in arms and hands. I notice when I can work out the muscle knots in my shoulders it seems to feel better, so it could be partly mechanical in any event I will run it by my rheumatologist when I hear back from him. The IME doc did a pretty thorough neurological exam and seemed impressed with my reflexes and strength so I'm not too worried, it just feels REALLY WEIRD.... :glare:

Lisa check with your massage therapist or at least let them know about it. It could also come from tight muscle in your neck which is why it feels better after a massage. Just a thought. :rolleyes1:

drz
06-01-2014, 03:37 PM
Neuropathy usually starts in the most extreme parts of our bodies, the feet and then the hands. It relates to the circulation of blood to those areas so any restriction or lack of movement that reduces circulation will tend to make it worse and exercise will usually help reduce it a bit. Think of when a limb goes numb from sleeping in wrong position which cut off circulation to that area and you have to restore movement to wake that part up again.

LisaT
06-02-2014, 02:28 AM
Thanks for that distinction. Now I don't think it's neuropathy because it seems to start in my neck and shoulders. I will talk to doc and massage therapist about it.

greenjeep
06-05-2014, 01:11 PM
Lisa
This is my problem too (anxiety). It is terrible because I never know if I'm really feeling sick or just anxious about something or if the bucket fill of drugs I take every day are messing with me.
It is nearly devastating some days. Done days I feel so good I think it was silly of me to feel any other way.
I have been on the roller coaster for 4 years now and an no closer to understanding. I feel your pain. Hang in there.
For me some good rest helps sometimes.


Sent from my iPhone while driving on the freeway.