I can't take much more!

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rhondamac
Regular Member


Date Joined Feb 2011
Total Posts : 58
   Posted 3/17/2011 10:30 AM (GMT -6)   
 
Rough day yesterday... no sleep last night... More pain today...I can't take much more of this!
This MCTD is suppose to be a milder diagnosis???? It sure doesn't feel that way to me!
I am at my wits end with this! I need this Plaquenil to kick in soon or I am gonna lose my mind!
My pain is moving to other areas of my body and NOTHING works! The Dr office said to give the Plaquenil some time.
I know that it takes a while before it starts working, but what do I do in the meantime?
If any of you out there reading this believe in prayer...I could use a few right now because I am ready to
just throw in the towel and check out. What's the point of living if all you feel is pain!
 
 
 
 

panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 3/17/2011 12:08 PM (GMT -6)   
I know the feeling of "ok, i've played this game long enough" i don't want to play this one anymore. you're here for a reason. I am going through a flare and feeling like it would be nice if drs. could just like put us to sleep for a good three days of rest. lol. I am not familiar with mctd? find something to distract you. i know it is almost impossible. if you are feeling that overwhelmed call your rheumy and go in, maybe they can put you on a medrol pack until the med kicks in. if you are feeling like you are loosing it... call your dr at least, suggest to him after the med starts working you want to go to a pain clinic. i learned a ton from going to one. Physical therapy and massage help a lot, biofeedback, deep breathing (for me in a dark room, with no noise or sometimes relaxing music) can really help. I really know how you feel. Auto immune diseases are frustrating to say the least. it is a challenge, for whatever the reason some people get to try to learn to live with.

You are in my prayers. Please keep me posted on how you are feeling. please call someone when you are in that amount of pain, then the vicious circle of anxiety begins...will it ever get better, remission, is this the best it is... I promise you it may take time and some very patient drs. but you will have bad days and they wont seem so bad... you will be able to see joy in little things. I know right now that seems impossible. i am not a dr. just a little sicky...with 2 Auto immune, persian gulf illness, gerd, ibs, depression (at times) and anxiety and that is the tip of the ice berg.

Look for the simple things that bring joy, Own your disease don't let it own you. I still have problems with that but i try really hard.

God bless you and help you make healthy choices, may He be with your Dr.s in making treatment plan, and help you convey your thoughts clearly to your drs.
with healing thoughts

mscrowbar
Veteran Member


Date Joined Nov 2010
Total Posts : 877
   Posted 3/17/2011 2:18 PM (GMT -6)   
I am so sorry that you are suffering so much. It can be so daunting and all consuming when we feel that way. But, it will pass. You may not be totally pain free but it will lessen enough to become a "back burner" type symptom that you will be able to ignore. Some days will be tough and others will be absolutely wonderful. Concentrate on those.

I have had several things thrown at me the past several months that included 2 surgeries and I am so tired of being tired. But when I go home from work at the end of the day and am greeted by my three wonderful grandsons, I am in heaven and this is the reason I do not give up. My 2 year old grandson and I have a "mommom and special boy" time, he gets his blanky and sits with me and we watch tv. I get snuggle time and rest at the same time and he feels special because he is close to his mommom and she watches his favorite movies with him. (he doesnt even know that I use this as my "down" time and it helps me relax and get over the frustrations of a long work day.)

So many things have changed in my life but there are so many good things going on too and these good things far outweigh the bad.
I had to make changes, yes thats true, but I am still here and I still enjoy life, especially my grandkids.

Even though you are hurting you have to get up and do something, anything that will make you feel good emotionally, make you feel like you accomplished something. this will help you feel better mentally and physically. Before you know it, the pain will be tolerable. You cannot let it control you, you have to control it.

I know that this not what you wanted to hear but there is no miracle drug that will take away all our pain, so out of survival necessity we must learn how to live with it, inspite of it.

I will be praying for you.
Denita
***************************************

Fibromyalgia. Arthritis/bursitis/meniscus tears in both knees.
Cancer survivor

rhondamac
Regular Member


Date Joined Feb 2011
Total Posts : 58
   Posted 3/17/2011 2:52 PM (GMT -6)   
Thank you panther fern! I have to apologize for my post. I was so very down this morning after a long night of pain. I don't want to stop living... I just want relief as I am sure everyone here does. I spoke to the dr. office today and they are putting me on prednisone for a 30 day trial period to see if it works. I am scared to take that but I guess I dont have any other options....

Thanks again for the prayers and the support!

Rhonda
Connective Tissue Disease and Fibromyalgia.

Meds include; Mobic, Plaquenil, Tramadol, Prevacid, OTC Sleep Aid.

mechiko
Regular Member


Date Joined Jan 2011
Total Posts : 82
   Posted 3/17/2011 7:37 PM (GMT -6)   
I think we all have days like this, I know I sure have! Hope you feel better soon.


Kathryn

panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 3/17/2011 11:05 PM (GMT -6)   
Maybe you just need a boost and i am sure 90% or more (in my very unreal scientific study proves) that all of us had an on off switch at times so we can just gather our thoughts and relax, which to me is a stressful word but i am working on it. Kathryn, Rhonda, Denita, all of you are wonderful people with unusual hurdles. and maybe we are not fit enough to do the high jump or hurdles but i tell you what if any of you need to make it over the bar or hurdle let me know and i will be right behind you pushing you over!!! (i am pretty weak but it is the thought that counts.) lol

I appreciate having somewhere to go and either vent or give encouragement, It is hard to be married for such a long time and see someone you love just pulling away as my diseases progress ...not out of meanness out of the unknown. He is a work horse, he has been a marvelous soldier, machinist and police officer, He has a solid foundation which we built our family on, great morals, principles, He is 41 i am 40. and a week ago he had to put my shoes on for me. My friend who is a physical therapist saw this and was enamored by this, i was once again humbled. and honestly embarrassed. You are the only people i have told. I applied for VA disability as they think many of my problems are from serving in the Persian gulf in 1991, acid rain, inoculations for chem warfare, and for whatever reason my body did not like much of that. Who knows. I just feel a chasm between us and it scares me. He has to work so hard to keep us going . Well i didn't mean for this to go into a icky direction.

With much love... Diana

rhondamac
Regular Member


Date Joined Feb 2011
Total Posts : 58
   Posted 3/18/2011 9:11 AM (GMT -6)   
Thank you for the words of wisedom Denita! Today is a better day as far as the pain level goes. I couldn't sleep again last night though so I am very tired. My dr prescribed 5mg of prednisone 1 to 2 a day. I am thinking about waiting to see if this pain stays at bay before taking it. Do you think that is ok? I just hate to take another med if I dont have to. (((panther fern))) I am thinking of you and hear if you need someone to talk to!

Hugs to you all!
Connective Tissue Disease and Fibromyalgia.

Meds include; Mobic, Plaquenil, Tramadol, Prevacid, OTC Sleep Aid.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 3/18/2011 9:43 AM (GMT -6)   
The prednisone will decrease the inflammation which is the cause of the pain...you will feel much better.

If/when you decide to take it, be aware that it often affects the ability to fall asleep at night -- so take it as early in the morning as you can. I've never heard of taking it as two different times a day, I'd have to take together in AM or I'd simply never sleep!

Cheers,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

mscrowbar
Veteran Member


Date Joined Nov 2010
Total Posts : 877
   Posted 3/18/2011 9:50 AM (GMT -6)   
just asking....do you think that you may benefit more from getting a sleep aid rather than a pain med? I have learned thru much trial and error that my pain levels are way low if I get a good nites sleep. I take much less meds when my levels of pain are low, so this in itself makes me feel better. I take Ambien cr, it helps me to fall asleep and to stay asleep. As long as I take it and allow a good 7 1/2 - 8 hours sleep, I don't wake up feeling groggy.
Denita
***************************************

Fibromyalgia. Arthritis/bursitis/meniscus tears in both knees.
Cancer survivor

panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 3/18/2011 10:26 AM (GMT -6)   
Hi, thank you Rhonda it is nice to know someone has my back. and My rheumy always tells me to take my prendisone in the a.m. right away because i am a terrible sleeper. I do take med to sleep but i have tried lunesta, ambien and ambien cr and the list goes on... i have restless leg as well from an old injury i suppose but i suggested Klonapin... it is kinda in the benzodiazapine family like Valium and stuff but i can't take benzo's they give me headaches... any way I take a low dose of klonapin and night and i get a more restful sleep but i still get up 3-4 times. but i can go back to sleep. There is a natural thing your body produces called melatonin. you can get it at Walgreen's or walmart inexpensive ask your dr first because i don't know your meds and i am not a dr. but it is natural and you take it about an hour before bed and it is very effective for many people. my daughter who has aspergers uses a mild dose to help her sleep because her brain doesn't relax. (that runs in the family the busy brain.)

wishing all of you joy and Hope and a mild lupus day!!! I am feeling pretty ok today. and i will be happy with that.

hugs
diana

panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 3/19/2011 11:41 AM (GMT -6)   
Hi Rhonda

Checking in on you... I am on a decent day!! might be due to 20 mg of prendisone for 5 , i have candidiasis in my esophagus and infection in bronchial s and lung dr thinks candi in my tummy and gi. so he put me on pren and some killer anti fungal and i finished an antibiotic two days ago, (i hate being on anti biotic) and i am still coughing up a bit of crud but my joints feel decent. i called the Rheumatologist to see if i could still get my infusion on Monday (usually you can't if you are sick with bacterial or fungal or whatever) but since i am at the end of treatment he said sure. Which took a big load off of my plate, because the orencia really helps!!!! and then he said if it relapses they will just give me refills.

Have you had your B12 checked (metabolic panel) i have been having tons of symptoms that are not fun. and i have had low b12 several years ago. so i Googled it today . B12 Intrinsic factor. it is a simple blood test. it can really mess with you. just worth getting done the next time you go in.

Hope you are having an upbeat day... I am still in pjs it is 11:40 i did quick sweep my kitchen and mud room, and switched over laundry, for me that is like marathon esp lately. I am fighting slight headache so i am pushing fluids. I need to do my physical therapy so well, because i am suppose to...lol
I am grateful to have you to bounce ideas off of.

With healing thoughts to all who roam this site... joy and well wishes
diana the ding bat
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