Broke down crying at a concert last night

[D4]

Some of you have read other posts from me. Different meds just haven't been working and I have bouts of hardly any sleep to sleeping almost all the time without ever feeling rested. I've been sleeping most of the time for about 6 weeks straight. I still feel sleep deprived 98% of the time.

A couple weeks ago, my neurologist said he didn't know why I'm not responding to anything and he ordered a MRI of my brain and brain stem (they turned out ok!), more lab work, and was referring me to the Mayo Sleep Disorder Clinic. Thursday Mayo called and set up my appointment for May and said to continue my current meds. So I'm hopeful they'll figure out how to fix me and find out if anything else is wrong with me, but that is a long time to continue this poor quality of living.

I had recently started taking vacation and personal time for the first couple hours of work most days because I physically can't get up. I had my doctor write a note at this visit, so I've been taking 1-2 hours of sick leave in the mornings since then. I can't work later to make it up because I have to go home and collapse for almost the whole evening and night. I'm an excellent worker and I take pride in my work so I've been giving my all to my job, but I have no energy left after work. I have just about zero life at home and hubby has tried to be understanding. (But it's hard for him -- How can I possibly be tired when I sleep most of the time?)

Last night was a concert I booked months ago and I've been so excited. We had exceptional seats (8th row center). I slept all afternoon so that I could hopefully stay awake for it. We got to our seats 20 minutes before the show and I couldn't stop yawning. Then the weirdest thing happened. After the first song, I started crying and cried through almost the whole concert. I finally realized I've 'hit a wall'. I'm suffering from extreme sleep deprivation (even though I sleep a ton). This has been going on about 6 weeks and to think I have two months more like this (until Mayo) is overwhelming. My hubby couldn't understand why I was crying because the performer is one of my favorites. (Other than this one concert, I've been doing NOTHING on the weekends.)

So I now think I'm suffering from depression because of all this, but I certainly don't want to throw another drug into the mix (especially anti-depressants.) Maybe I'm just pushing myself beyond what I should be doing under these current circumstances. Maybe I should try to see a counselor of some kind.

I knew some of you would be able to relate to this.

[ctravel12]

Oh D4 I am so sorry for what you are going through. I can understand not wanting to try any other meds, but have you had your ferritin level and even your thyroid checked. It sounds wierd but for thyroid being the smallest gland in your body it can do the most damage. I do not have any medical background just wanted to give you some advise and support.

Is there anyway your dr can get you into the Mayo clinic before May. I know it is just two months away, but for the way you feel I am sure it feels like an eternity. You are so right you need your quality of life back.

Please let us know if you are able to get into the Mayo before May, and if not, please keep us posted on how you are doing and when you do go to the Mayo what they have to say.

[D4]

Charlene, thanks for the comforting words. Yes, they've checked my ferritin level, thyroid, and ran lots of other blood tests. A doctor at Mayo reviewed all my records and said to stay on the same meds. They had the option of ordering additional tests to be done here before I go there and they didn't, so my guess is they think the basics have been covered.

I can't get into Mayo before May, in fact I think some pull was done to get me in at the beginning of May instead of later in May.

I feel stupid for crying through the concert. The more I think about it, I think I cried because it had been so long since I did anything normal. And I wasn't even fully 'there' to thoroughly enjoy it if that makes any sense. I feel like life is slipping by and I'm just struggling to get through each day.

I'd go completely nuts if I didn't have this board. Only people here can relate to the horrible side effects of the medicines we take and weird emotions like this.

I'm so happy my doctor referred me to Mayo and pray that they can figure out how to help me be me again.

Diane

[ctravel12]

Oh Diane please do not fee stupid for just crying. Believe me I have had my share of crying. We will all cry with you and be there whenever you need anyone. I am saying prayers for all of my rls family and you are definitely included.

Hang in there, we are here for you. This is a wonderful support group and will definitely get all the support that you need.

[Aiken]

That's terrible. I've been semi-sleep-deprived for extended periods (e.g. the last three months), but never totally deprived until just this previous week. I swear, that about killed me before I found something that worked. I don't know how you've done it for six weeks.

I second the ferritin suggestion. I know you just said you've had it checked, but not all doctors will prescribe supplements if your current level is roughly normal. Mine checked at just under normal, but my doctor said it's best for RLS patients to be above normal and quoted a target number to me that was about half again as high, if I recall correctly. I'm currently taking 65 mg of elemental iron (Feosol) every other day. (Note: "elemental iron" vs. "iron" vs. other variants is important for dosing.)

If you're not supplemented already and your levels are roughly "normal," you might want to try a supplement. You can also get an injection that'll last longer. It probably won't solve your problem. It didn't solve mine. But it made a big dent in the severity, pushing my nightly onset back at least 2-3 hours and making the peak last only a little while.

Edit: Though I'm making suggestions above, I'm really not the person whose advice you need. Note the disclaimer below.

_________________
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

[Sojourner]

Diane, truly sorry that you are going thru such a time right now. I hope that, in some way, each upcoming day will be better than the one before.

[Sojourner]

Diane, back again. I felt really bad that I could not offer some suggestion or something that may have been more useful. After reading some other threads, I thought maybe one of the suggestions mentioned (on another topic) might be worth at least mentioning--not that it's rls specific or long term as much as that it might bring some momentary relief or be a feel good thing. Is a good massage a possibility or some whirlpool treatments, steam bath, etc. Maybe a chance to pamper yourself for just a bit or take your mind or things for for a moment. In any event, know that myself and your other friends here are massaging you with with warm thoughts and prayers. I know we all wish we could do more.

[D4]

Thanks Mark. The massage idea is excellent and I'll pursue it this week. I've got to get some relief.

I had to laugh about another suggestion because I have an awesome 5 person hot tub in my sunroom. I currently have it empty for two reasons: 1) I don't have the energy to do the daily chemicals and 2) I'm pretty sure that I would fall asleep within 2-3 minutes and drown! (I am not exaggerating -- almost anytime I sit down without anything I have to do, I fall asleep almost instantly.) I would be just like a little kid that you can't leave alone for a second near the water! (Hubby doesn't enjoy being in it like I do.)

Thanks for caring!

[becat]

Oh Mark I'm so glad you brought that up.

Being good to ourselves is very important.
The smallest things can give you a little sense of control and a lift to our spirits.
I make it a habit to do silly things that count as "pampering" at night as part of my bedtime routine.
Things that I would normally do and just put a twist of the brands or the products I use. I wash my face with knock brands of the face cloths I like. I use a nice lotion in a scent (Moonlight Path B&B works). I brush my hair, whatever, anything to feel like I'm putting myself first behind the door of the bathroom.......it's just me time. That whole ten minutes or so is my time to say I made it through the day. Silly but it gives me a bit of joy, even if I did not have much joy during the day.
Diane I don't want you to think that this is not normal after what your going through. To boot we are women and hormones just make it worse. I know you were embarrassed, but that moment will not define you my dear.
I've embarrassed myself for years because of RLS and it's lovely side effects in my life.
But I do just like you did, cried, came here and screamed.
Hugs to you and I agree with Mark......do something wonderful for yourself. Your not in an easy time right now.
Heres to the Mayo helping you find your answers! Amen!
Hugs
Lynne

[jed]

I too have a crying problem and completely understand the embarrassment of such situations. My worst is when I am at work and start to feel overwhelmed then start crying for what I feel is no apparent reason. I then have to call my assistant in to finish my days work which compounds the problem because I am intruding on her day. Yesterday my crying bout started around 9 am and did not calm down until around 7pm and am still having on and off bouts with it today. But I guess only fare to let you now my Dr. diagnosed me as bi-polar, menopausal, and suffering from depression.I get to the point of just wanting it all to end, that I will never have any sense of normalcy in my life. I am not really sure how far into my story so I will end with that I am glad you people are out there to share with and D4 you are not alone and hope to read more of your posts with positive progress in you situation.

jed

[Sojourner]

jed, sorry for the bad day(s). So many of us have been in the same shoes and can empathize with you that it is no fun and how bad it can hurt. Glad you took the time to talk with us. I think that if you have read many of the posts you know how these things can and do come and go. So, I do believe that there will be better days ahead for you and that you will weather the storm. Til then, know that your friends are here to listen and that we care.

[D4]

Jed, I'm so sorry to hear about all your problems, especially when you say sometimes you want it all to end. Feel free to post more about what you're going through. Family and friends may try to understand, but they really don't get it.

I ended up going to a psychologist last week. (I knew an excellent one from when one of my kids was having a tough time as a teen.) He is usually booked far out, but fate was on my side because someone called to cancel right before I called. He said Vicodin can make you have emotional highs and lows and he thinks that contributed to me crying at the concert. In his opinion, my current meds aren't right for me (Vicodin and Clonozopam), but he agreed that I need to do what my neurologist and Mayo said which is to stay on them for now. I'm so completely exhausted all the time and I'm pretty sure it's the Clonozopam. It helped talking with him, he gave me some ideas and things to try to help me feel happier, and I set up another appointment in a month which is a few weeks before I go to Mayo.

I received my Mayo paperwork and I'm so excited that my doctor is the first doctor listed in the Mayo Clinic Algorithm for Treating RLS (and the names aren't in alphabetical order!) His credentials are outstanding, so I think I'm going to one of THE best people out there for this. I pray that he can help me get functional again. I just wish I didn't have to wait so long.

Good luck to you and each of us in getting through each day.

[ViewsAskew]

This can be such a disabling disorder, can't it? It seems to affect so many parts of us - physical, pschological, relationships, work and more - and often all together, making it so overwhelming. I hope you find a combination of meds that help the RLS and limit these other problems and side effects.

D4 and Jed, I had a horrible time emotionally on one med I took. It did change my moods and mental state tremendously. Adding the augmentation I was experiencing, the extreme exhaustion, the terror of having everything be out of control, the uncertaintly that anything would improve, etc. and I was a basket case. . .crying while walking down the street, panicky, and, well, I don't need to decribe it, do I? You know as you are feeling it yourself.

I can't say that I know that there is a magic combo, just that I was able to find something and come out to another place. A much better place. All is not perfect. My life is not the same - and never will be. I've lost a lot, but have regained much. Mostly, I'm just happy that I've found a sort of equilibrium with the RLS, the side effects, and my mental state.

Keep plugging away as trial by fire is often the only way to a workable solution. We are all here and if nothing else can commiserate and understand - sometimes, for me, that was the thing I needed most.

[jed]

Adding the augmentation I was experiencing, the extreme exhaustion, the terror of having everything be out of control, the uncertaintly that anything would improve, etc. and I was a basket case. . .crying while walking down the street, panicky, and, well, I don't need to decribe it, do I? You know as you are feeling it yourself.

Exactly, I feel like I am coming apart at the seams, for all the above reasons, Right know I am getting ready to go get a CT scan to check for reason for high prolactin (?) reading. Scared. know it's probably just menopause, or meds but.......

THANK YOU JED
PS : crying right now. Don't know how going to pay for all this medical stuff

[Sojourner]

D4, I'm glad you were able to find help with your psychologist. I think it's still too bad that many do not explore this option because of mispercetions about what that says about ourselves i.e "I'm crazy", I don't need help, I can do it myself, etc. I know that all therapists are created differently, but I think that if you can find a good match then that person can be a wonderful source of support and help.

Jed, you mentioned a Dr. in your post. I hope it is someone who is not just diagnosing and prescribing but also someone that you can call and lean on in times when you need more support. If not I hope you can find someone like that. If not we are still here.