Darlene aka monkey me

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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/21/2007 5:35 PM (GMT -7)   
I hun, I read you post to chaya, I am so sorry. You sound absolutely awful. Is it the Fibro that is the culprit? Isn't there anything the doctor can do to help you?
 
You're in my prayers
love
carol
God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/22/2007 8:33 AM (GMT -7)   
Darlene, you have been on my mind too and I'm worried about you. You have just been so sick lately and can't seem to get any relief. You are in my thoughts and prayers.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



monkeyme
Regular Member


Date Joined Mar 2007
Total Posts : 153
   Posted 8/22/2007 9:26 AM (GMT -7)   
Oh thank you so much for your care and concern. I really do not know what is causing the severe body pain. I have had fibro for many years but have never ever felt anything like this.

In the past year, when I was dx with UCTD an then Lupus, things have changed. The fevers for one thing. Right now I never go below 99.4. I have had fever more often than not in the last year. With this new change, the pain has just increased and increased.

I am unsure if its the c. diff causing the lupus to flare, or the c. diff causing the pain, or the lupus flaring on its own.

I am going to my rheumy today at 3pm. Her office is so wonderful. When I told them that I was having a really hard time, they got me in the next day, which is amazing because this woman is booked out months.

So, I will wait until three. The pain is somewhat less right now, but it still feels as if every nerve receptor on my skin is screaming, and it screams loud enough to wake up the ones in my muscles and joints too.

Thank you so much for your kindess. It is so nice to know someone is thinking about me and praying for me.

My hubby who is usually really good was so crabby this morning. The kitchen was a mess, dishes everywhere, no laundry done, he needs to leave for work...I mean I am kind of a neat freak, and this place looks like one of those houses you see on COPS when the camera is zooming from corner to corner revealing one piled up horror after another. I am in bed, unable to really move until my body fully wakes up. I am freezing and have skin chills from fever. I have a Nintendo DS that my husband and kids got me with some fun little games on it, and I was playing that and I just stopped and felt like a COMPLETE FAILURE. My entire house is crumbling around me....nothing that should get done is getting done, and I am playing nintendo in bed? And to top it off I am mean and snappy because of the pain, and because I feel like no one understands how hard I have to try just to breath.


They say they understand, they act like they do sometimes, but I know that they really have no idea.



And then I think of our sweet Barbara Lee, and what she goes through, and how strong she is. And I think about the advice I would give her about feeling like a loser, and I try to take the advice myself.

She is always helping me!

And I think of my whole Lupusie family, and know that they know, and I say a prayer of thanks...and it gets me through.

I know that those close to us have to get so tired of it. I really just wish that all of my family (mom, dad, sis, hubby) could feel what I felt for 10 minutes. I would never wish it ont hem for a lifetime, but just ten minutes. If they could feel what I felt and know that it is a constant thing, I think they would be more tolerant.

Course the way the human brain works, they would forget it, just like women forget the horrid pain of childbirth.

Thank you for letting me rant! A good rant works wonders to get you through a few minutes doesnt it?

Love and Hugs,
Darlene
Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 8/22/2007 11:16 AM (GMT -7)   
Darlene:

I hope the rheumy is able to help you today. If not, you may want to see a neurologist. I had similar pain years ago in my arms. The neurologist later found that I had sensory nerve damage, the actual diagnosis was peripheral nerve damage. When it first started, if anyone or anything touched that part of body (upper arms), the pain would make me scream and I would literally fight back as if someone was attacking me. And yeah, it makes you mean. Couldn't phathom having it all over like you do, I really feel for you. A year or two later I ended up loosing all feeling in my feet, legs, arms and hands. Now, I'd say about 5 years after that, I am able to feel in my arms and legs normally, but still some problems with the hands and feet. This is just my story, but my hope is that your pain doesn't stay a constant feature in your life. I do know the doctors originally thought I had fibromyalgia. Have they tied nerve-blockers to see if that medicine may work? It is worth a shot. It may be something like nerve inflammation and Toradol may be of use too. I swear nerve pain is the worst pain. It is really overwhelming and makes you severely depressed after time.

Try and hang in there. I realize it may be the last thing you want to hear, but I really feel once the doctors figure it out, you will get relief. Your in my heart and prayers - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


monkeyme
Regular Member


Date Joined Mar 2007
Total Posts : 153
   Posted 8/22/2007 3:35 PM (GMT -7)   
Thanks Kristin for the information. My rheumy was very helpful today, she spent a lot of time with me. Basically she wants me to start back up on the Plaquenil on as high a dose as I can tolerate, even though it may make things a little more complicated in the c. diff area.

If I am unable to tolerate Plaquenil she will put me on methotrexate. She hates to do anything that is going to supress my immune system when I am fighting such a severe infection.

I was also prescribed Amitryptaline. I have not been sleeping well at all, and she is hoping it may help with some of my pain as well.

She is concerned that the Amitryptaline may make the Sjorgens a bit worse as I am having a whole bunch of trouble with no saliva.

Hippi if you read this, I know you started Amitryptaline, how is it working for you and did you experience dry mouth?

Thanks again all for getting me through this.

Love and Hugs,
Darlene
Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/22/2007 3:42 PM (GMT -7)   
Darlene, I did take Amitriptyline and it helped a lot with my sleep and some with my pain and my headaches, but it made my dry mouth almost unbearable. My rheumy just switched me to another med in the same family that doesn't have as bad of side effects. The new med is working pretty well so far - it's called Doxepin.

I'm glad your rheumy appointment went well and hopefully she'll find the right combo of meds that will help you start feeling better. Just make sure you have plenty to drink because your mouth will probably get even more dry. I also have some hard candies to suck on which helps.

Please keep us updated when you are feeling up to it.

Love and hugs
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/22/2007 4:23 PM (GMT -7)   
Darlene, I'm especially glad that you have a good rheumy who will get you in when you're having more problems than usual. I hope you can tolerate the additional plaquenil and that the amitriptyline helps as well.

You talked about Barbara Lee and about reflecting on all she's going through. I wonder if you'd judge her if her house were a mess. Would you really expect her to be up cleaning her house till everything was spick and span? We're all so hard on ourselves but so understanding of each other. I so understand what you're going through. I hope all of us here can help you give yourself permission to stay in bed and play nintendo and take a well needed break from life until you feel like coming out from under the covers. And to do it without feeling guilty. You body needs the rest.

Barbara Lee is such a dear and so are you. I'm glad she's able to help you. It's great that you were able to vent. I've found that writing has a real healing effect on me and I should do it more often. I hope you fever goes away and that your pain subsides. Take good care of yourself Darlene. We love you.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/22/2007 8:24 PM (GMT -7)   
Hi Darlene, I am so glad you were able to get into your doctor and have a productive experience. I hope these meds work out for you. I have to agree with Patty, She's a pretty smart cookie! Give yourself a break. Order pizza and grab the paper plates.
I have been know to hire someone to come in for a couple of hours twice a month when i am not well enough. Usually a friend that doesn't expect a lot. It used to be really hard to let someone touch my house but when it took me 4 hours to mop a kitchen floor and I was wiped out by the time I was done my pride got pushed away. It's gets down to what is practical. Like I said that's 2 days a month. The other 28 days I just say the heck with it. Of course I'm single and live alone but I was married with kids and I know there is a big difference. Just give yourself time to heal. The dishes will still be there when you feel better.
Let us know how the meds are working
love
carol
God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/28/2007 5:10 PM (GMT -7)   
Darlene, Havn't heard from you in a while. Have you had any success with the new med? I know it's hard to feel good about yourself when you feel so crummy but I hope you are beating the pants off those nintendo games!
love ya
carol
God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 8/28/2007 5:53 PM (GMT -7)   
Hi Darlene:

First off (((((gentle hugs))))) for you. Honey I'm so so sorry I didn't see this sooner and respond quicker. I've kinda been in my own little world and I'm sorry I wasn't here right away for you. I'm so pleased you were able to vent here and let us know how difficult things are right now.

I agree with Patty you don't need to worry about your house. You need to focus on keeping yourself in a safe zone health wise. I know how difficult C-diff is. Have they tried to do a antibiotic taper on you? That's how they got rid of my C-diff. I sure can relate on the fibro pain and feeling out of sorts. I'm not sure if this will be much help or not, but your hubby being cranky is ok. My hubby does everything around our home, and there are days that I know he hates that I'm sick. I in the end know though, that he's alright with it. Our wedding vows were in sickness and in health till death do us part. If the roles were reversed our spouses know we'd be handling things for them.

Don't beat yourself up about the video games. Sometimes our pain is so bad, we'd loose our every loving minds if we didn't do something to distract us. I say you keep on playing that game and let it help ease your mind a bit. The world isn't gonna stop cause the dishes aren't done. I'm guilty of the same thing feeling like a looser because I can't keep up with the house and such. We can only do what we're able to. Honey you're doing the best you can, that's good enough for now.

I hope that your Rheumy did something to help you and that you're feeling a bit better now. Please when you have a chance let us know how you are. Know that we're here for you and love ya. It's hard to be this sick it truly is. Just rest and take care of yourself. The rest will follow on another day. I know cause it's that way in my house. There's always tomorrow.

Hugs to you,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

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