Very distraught, 3 days of the worse pain I have ever had and have been in tears for all this time!

General
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Hi everyone - it's very hard to me to write this right now, because I have been horribly depressed. I haven't slept for 3 days because of the pain, nor can I get around my home without holding on to everything. I am normally a very organized person and take a lot of pride in my apartment in keeping it clean, but the past 3 days, I can't even do the most minute thing. I tried doing my dishes even, and spasms just ripped up and down my spine.

I have to back up a little bit. About 4 years ago, I was diagnosed with Divirticulosis. The reason was because of my Aspirin use. Medicaid had cut out Celebrex - which worked wonderful for me. Others do not really work for me. Well, thankfully, I had been on a waiting list to see one of the best Rheumys here in Nevada, but I can't see her till the beginning of May. In the meantime, I have had to take Aspirin - which takes the edge off my horrible pain. The blood work I had a few months ago showed that my liver and kidneys weren't functioning well because of the Aspirin.

My stomache doctor warned me that I was allergic to aspirin and I must take Tylenol. Well, it doesn't work at all. I am always afraid when I take the aspirin, but I am in so much pain, it sometimes overrules what it is doing to my kidneys and liver.

I am supposed to get blood work done for my nurse before this Tuesday, but I just can' walk without tremondous pain. Also, this Wednesday, is my Mammogram and Bone density tests. I am so hoping I can make it. The pain is so bad, that I can't even get into my car. Absolutely every inch of my body is flared up. Plus Migraines to go along with me - but I have medicine for this, thank God!

When I get like this - I feel like I am not 'all there.' Just really out of it. I dread going to bed, knowing the pain is going to be so horrible for me. Many times I have to sleep sitting half up and this helps a little, but then my neck starts flaring up. I had read on the website about a muscle relaxer called (I hope I spell this right) Tinazadine? I am going to talk to my nurse, Megan about this, as I see her late Tuesday morning. I have no appetite and when feeling well, I see lots of friends, we go out, have fun. But I feel like this won't happen anymore. If the new Rheumy can't help me, I don't know what I am going to do! Love to all, Laurie

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Hi Laurie,

So sorry to hear of this terrible pain cycle hitting you. I just went to the Rheum and he gave me the same med, I fill mine by mail, so just sent them off Friday. The Dr said that it is one of the better muscle relaxants, that it is used primarily for patients with MS.

http://www.rxlist.com/zanaflex-drug.htm

Laurie, I hope you find 'your Doctor' in your new Rheumatologist. I hope his wisdom and care will make a huge difference in your health and in your life. Keep looking up!

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Hi SK - well, here it is 5:30am - up for the day - sore as ever! I have lost 6 pounds - which I don't need to lose, but this always happens when I have a bad flare up. It is just stunning to me how Fibro cane affect me emotionally, mentally and especially physically. I am anxious to try the Tinazidine - and truly hope she (Rheumy) will let me try it! I am happy that it's a female doctor as I think they are more compassionate and really pay attention to what patients have to say and listen to their concerns. Yesterday, I looked up 'Tinazadine, and it looks really promising.

I am concerned though in seeing my nurse Megan tomorrow, because I have to park my car about a block away - where the parking lot is. Walking down the sidewalk, there is nothing to hold on to and with my balance being off, it's going to be a real challenge for me. On a humorous side, the sidewalk is right next to where a ton of cars whiz by. The drivers will probably think I am drunk!! (Smile). I tried using a cane - but with my essential tremors in my hands, I can't hold the cane steady and it makes me very insecure in using it.

I have accepted long ago, that I will have chronic pain always in my life. But THIS pain that I am having is just too much. It's not acceptable to me at all and if the new Rheumy can possibly get it under control, then I can handle it. Love and Hugs! Laurie

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Laurie, I don't have any words of wisdom for you (I'm fairly newly diagnosed), but I just wanted you to know I was thinking about you and praying you get some relief.

Gentle hugs,

Laura

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Make sure you ask her if any of your meds or med increases could have caused this balance problem. Gapapentin made me this way, I just reeled! I know it works well for many, but it did not for me! I also had vertigo after the last car accident, and through Chiropractic adjustment, quickly got over it, there are also exercises, if you think it is vertigo.

I will never understand why people are made to walk so far to get into a Dr office! Makes no sense!

Please let us know how it goes, take care and get well!

Hugs,

SK

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HI SK - I made a mistake, when I was hoping the Rhemy would let me have the Tinazadine. When I see my nurse, Megan tomorrow, it's actually her that I will ask about the Med. I can't wait till May to see the Rheumy for the Med because i am in pain so much. I need to get my blood work done early in the morning tomorrow and this means I have to get up about 5am to allow me to unwind a bit. Then, after this, on to Megan's. It's a LONG day when one hurts so much - isn't it?

Have you ever done the most simple of errands,. and come home absolutely exhausted? This happens to me even if I grocery shop for just a few things! Then, havin to haul everything to my apartment! (smile). I went back to bed about 6am this morning and woke up about noon. I hate this because I am basically a 'morning' person. By the afternoon I am tired. SK, thanks so much for your support and encouragement! I wish that everyone on this website could be with me right now and just give me Hugs! Could really need it! Love and Hugs, Laurie

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HI Laura - thanks so much for responding! It's been a hell of a 3 days and thankfully, I will see my nurse tomorrow and see what can be done. My Rheumy appointment isn't till May, so i am hoping that my nurse can help me temporarily with all the spasms and pain I am going through. The spasms really mystify me because I never know when they are going to hit. I will keep everyone informed when I return from seeing the nurse tomorrow! Thanks for you thinking of me, as it's really appreciated! Hugs! Laurie

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Hi Laurie,

Oh you poor thing! And it's insane that you can't get Celebrex despite being allergic to asprin plus having it mess with your liver and kidneys. Can you ask your doctor to resubmit the request to the insurance company, while including all of that info? I couldn't get Lyrica until I got an ulcer from asprin. So it does occasionally happen that you can get the original ruling overruled.

This isn't an immediate help but the patent to Celebrex expires in 2014, which means a generic can then be manufactured. So eventually it'll be available to those who need it but can't take NSAIDS.

Can you bring anyone with you to your visit to your nurse? You surely shouldn't be going in the condition that you're in - or driving either! You really should have someone with you to watch over you plus advocate for you.

If you do go, I hope you can get a script for Tinazidine. I don't know how a doctor or nurse can look a patient in the eye who's in pain and who they have to send home still in pain and without an option for getting rid of the pain.

Please, please be careful if you go! And please let me know how you've made out. If I lived near you, I'd happily bring you.

Gentle hugs and consternation,

Petunia

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Hi Pet - my nurse and doctor resubmitted requests for Celebrex SO many times! Medicaid still refused, even after my nurse told them all that was going on with me. Right now I am exhausted and the thought of getting up tomorrow morning so early to get the blood work isn't going be easy!! I would ask my son, Jason to come with me, but he is working double shifts right now - so I don't want to bother him. However, he knows what is going on and is concerned. Especially with the 2 lumps I have in my right breast. I do have the Mammogram coming up on Wednesday, plus bone density. My girlfriends, Cheri and Meredith are both down and out with horrible flu, so I can't ask them to help. Other friends live in Fallon - which is about 2 hours away from me. So, I will 'grit my teeth' and get to Megan's (nurse) office somehow! I will definitely let you know what happens, Pet! Love, Laurie