How do people feel everyday?

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hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 2/1/2008 8:40 AM (GMT -7)   
I was just wondering how my fellow lupies felt on a daily basis.  I sometimes have trouble telling the difference between a flare and just feeling crummy because of lupus.  I know I was in a flare after the holidays and thankfully I am feeling better than I was a month ago.
 
Right now I'm not as sick as I was right after the holidays, but I don't feel as good as I did before the holidays either.  I just don't know what is an "acceptable" level of pain and fatigue and what people with lupus should tollerate on a daily basis. 
 
I really don't think I'm in an active flare right now, but I feel crummy.  I've been able to be up and around and can do a few things around the house and take care of the kids, but my body wants to be in bed resting and doing nothing, but I despise being in bed.  My fatigue on a scale of 1-10 is between a 4 and 7.  My pain has been ranging from a 4-6.  Like I said, I can be up and around and doing things, I just feel crummy.  I'd like to know if this is normal and how most others with lupus feel everyday. 
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; Evoxac; 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/

 

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AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 2/1/2008 10:16 AM (GMT -7)   
Hi Hippi,

I understand what you are saying. There is a point, just before feeling "better", where we feel like we should be up and around and doing.

I try to use that time very wisely. I get up and do some housework (depending on how I'm feeling, I'll try 5 minutes to 30 minutes) and then I rest for at least 20 min. Doing this many times thru the day. If my pain scale gets ANY worse, then I shorten the active time. For me, the active time is the one to watch. I'll even set a timer if I am only managing short active times. Its easy to get busy and forget to sit down. I'm always pleasantly surprised how much I can get done this way w/o causing trouble. But, again, I'm not as sick as you are. Anyway, as you feel better, you keep . . . slowly . . . increasing the active time. But as soon as your body warns you with pain, you drop it down lower again.

Not sure this would work for most, but its my little dance and I seem to do well with it.

Also . . . DON'T miss your meds. I have to really watch that I'm not missing doses or taking them late. This seems to make a big difference too. As I start feeling better, I can easily get distracted and forget the meds. When I am hurting, I usually am looking at the clock to see if I can take the next dose yet. So, as you feel better make the med schedule a real priority too.

This is a good topic. I'm looking forward to seeing how everyone else manages.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 2/1/2008 10:27 AM (GMT -7)   
Generally I can tell within the first 2 hours of the day what the day will be like. Some days the whole day is shot, and even a warm shower & clean clothes don't get me going. Those are the days I have pain (2-3 of 10) that ibuprofen doesn't handle (I don't have any pain meds) and I cancel some of my plans for the day, substituting w/naps & laziness. I usually have at least one day like this each week.

Other days I feel better, but I still limit myself to only 1 trip out to do something each day, and I try not to schedule more than 3 successive days of out-of-the-house errands, lunches, or other events. Too many strung together wipes me out for a couple of days...just massive fatigue, eye strain, and neuropathy, not pain.

I'm just now feeling well enough to schedule things around the house -- I have house cleaners once a month, but am trying to get regular days set for groceries, general pickup/trash, and laundry. I've picked M,W,F for these, so they aren't all crammed together either.

Definitely taking meds at regular times helps, as does a regular sleep schedule.

Then some days my mind and my energy say "You're just slacking, get back to work, earn money!"....

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions



Post Edited (Lynnwood) : 2/1/2008 1:26:48 PM (GMT-7)


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 2/1/2008 1:27 PM (GMT -7)   

Hi Hippi,

   This is a tough struggle with the mind and body. It's a constant battle going on with us. When we feel decent we wan't to do more and when we feel rotten we just want to lay around and sleep. It's hard to get the right balance at times.

   Rosie and Lynn had some great suggestions. With me working part-time, I have to conserve my energy for work and let things go around the house. Thank goodness my kids are grown and I live alone. It was so very hard when they were younger. My heart goes out to you!

    Fortunately, I have a very high tolerance to pain. I can't take most pain meds, so thats a blessing for me. When I do have extreme pain though, its misery. The fatigue is bad enough on its own but, with pain added it will wear you out.

   I hope things get better for you soon and you get a break. Hang in there and keep us updated. You are in my thoughts and prayers.

                                                          Babs


 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 2/1/2008 2:51 PM (GMT -7)   
Hi Hippi,
 
It's interesting reading how others manage their days.  I think you brought up a great topic.
 
My days usually start around 8am.  I try to get at least 10 hour of sleep at night.  Like Lynnwood, I can usually tell in the first couple of hours what my day will be like.
 
For pain.  I would rate myself on a scale of 4-6 out of 10.  The only pain I have is my neck arthritis and shoulder tendonitis.  Otherwise, pain is not an issue for me.  I know, it's weird.  So on the really bad neck days, the pain can be 8 or 9.  I'm a walking zombie those days.  Headaches, muscle pain, total immobility to move my head.  It's a mess.  Days like that happen about 5 times a month. I do nothing those days, unless it's a very important medical appointment.  Or I have a wedding to shoot! Then I have to suck it up and just do it.  Not fun.
 
I split my days up.  I do one major thing in tha a.m., then one or two major things in the afternoons, then one major thing in the evening (sometimes).  That's when I'm really busy with work, doctor's appointments,etc.  If I can get 3 or 4 things accomplished in one day, I've done really well!  On my slow days, I take advantage of just staying home.  Sleeping in.  Maybe doing a little house cleaning or a load of laundry.  But nothing major at all.  I try to get on the illiptical for a bit, or do some pilates.  But I enjoy crapping out on the couch with a mug of tea and the t.v. remote, or a good book.  And my cat on my lap of course!
 
Another thing I like to do that is relaxing, is take my camera and do some landscape photography.  I'm only a half hour from the mountains, and the drive is peaceful.  So if I have an afternoon with nothing to do, I might do that.
 
I pretty much keep my evenings open for relaxing with my hubby, or having meetings with clients.  We're not big socializers.  So that helps balance my day by knowing that my evenings are quiet.
 
Trying to balance my life right now is hard.  I had 15 doctor/medical related appointments in January alone.  Plus my work, home, etc.  It was a hellish month. Not the norm.  Balance will return soon I hope! 
 
From what you described as your normal kind of day, pain, etc, I think you fall into the same category as all of us.  I know I'm flaring when that butterfly rash appears, and I feel like I have the flu all the time..... If you can hit the flare hard and fast, it can be short-lived.  It's recognizing a flare from your normal daily way of feeling.  Do you get your blood tested every month?  CBC, ESR, GGT, ALT, Alk Phos, ALT, urine?  I get that done at the beginning of every month.  It's a great way to catch a change in your disease activity before it gets out of hand.  I think that is one of the reasons why I can keep my lupus fairly quiet all the time. 
 
Have a good day Hippi, prayers are with you,
Ginny  
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 2/1/2008 5:38 PM (GMT -7)   
Thanks, it sounds weird but it's kind of reassuring that how I'm feeling right now isn't too out of the ordinary for a lot of us. Lynnwood, I think you and I feel a lot the same. Some days a shower is even too much for me, but other days I feel like a can shower and do a few things. Thanks for all the suggestions too. I've been trying hard to do a lot of the things a lot of you suggested with balancing rest and activity. I keep a detailed calendar on the fridge and try not to have any consecutive days of appointments, errands, activities, etc.

Yes, the morning is the best time for me to try to do anything I want to get done. I can usually tell after about an hour or two after getting up how much I'll be able to do. I actually took a nap this afternoon, which I hate doing, but I really needed it. My daughter was home sick so she was resting and watching a movie and I napped on the couch.

I just need to accept that I'm on that lovely lupus rollercoaster and that I need to adjust my activity to match how I'm feeling. You'd think after almost 4 years I'd have all this figured out.
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; Evoxac; 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



redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 2/1/2008 5:49 PM (GMT -7)   
Lately whatever is in my spine is flaring really bad. I am miserable from it. With so many different issues I never know for sure if it is lupus or something else. I can say I usually have good days and bad.

Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone, Imuran, Procardia


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 2/1/2008 9:28 PM (GMT -7)   
Wow, great question, hippi! I didn't realize how bad things have been for me until I read these posts tonight! I just assumed that my symptoms were not as bad as anyone's here but it seems that I have very similar issues. I assumed my situation to be not so far along. Like hippi, I would describe my days as simialr to Lynnwood's and, possibly, Ginny's. Still working full-time has become increasingly more challenging which is why I wrote that desperate post earlier this week, I think! No wonder I am considering retiring.

Getting going in the morning is a major problem for me. Much like Lynnwood, I can tell within an hour if the day is going to go well or not. Increasing my prednisone to 8 mgs per day since Tuesday, has made it so I am not as swollen or achy in the mornings. My fatigue levels progressively increase each day, however, and by Friday's I am basically exhausted. I really am useless on the weekends and most of the time getting a shower and putting on clean clothes is a major achievement for me. My son and husband help out with most of the errand running and the heavy cleaning. I try to keep up with the laundry and with clearing clutter. My son and daughter do their own laundry and I am happy that part of my mom duties are over! My husband also helps me with grocery shopping because it is so painful most of the time to carry the bags or empty the cart at the checkout.

Despite all of this, I am finding it hard to give in. I'm getting closer, though!
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 2/2/2008 4:43 PM (GMT -7)   
Reading everyone's responses I just keep thinking how bad I feel that we all have to go through this andnever know from day to day how we are going to feel. I think I need to get better about accepting the ups and downs of this whole thing and try to flow with it a little better. Today was actually a pretty good day although I'm worn out now.

Redroase, I hope you get some relief from the back pain. I'm like you and sometimes can't figure out if some symptoms are lupus related or if it's something else or if maybe I have the flu, etc. Audrey Ann I give you so much credit for continuing to work. When you describe having no energy by the time you get home and by the weekend, you described exactly how I felt when I was working. I felt like I spent all my time away from work resting so I could have the energy to go back to work. I also know what you mean about it being hard to give in - I struggled with it for so long. The only thing I can say is that I think you will know when or if it gets to the point where you will need to retire. I struggled on and off for almost 2 years about quitting and then the month before I put in my notice, several things happened and I knew I just couldn't keep working. It was still a very hard decision.
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; Evoxac; 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



klstalks
New Member


Date Joined Feb 2008
Total Posts : 2
   Posted 2/2/2008 5:37 PM (GMT -7)   
Hi!
I am new to this forum and I am very glad to read all your posts. I was diagnosed with SLE, APS, Sjogrens and Polymalgia Rheumatica. I have just started my 2nd round of plaquenil but it has not started to alleviate my symptons yet.

I am concerned about how long I can work after reading the posts and identifying myself within them! My fatigue is interferring with my ability to function. Does anyone else suffer brain fog--unable to think or even converse with anyone--when the fatigue and pain become overwhelming? I use to think that I was just being lazy or too sensitive to pain prior to being diagnosed.

phndoc
Regular Member


Date Joined Oct 2003
Total Posts : 495
   Posted 2/2/2008 6:45 PM (GMT -7)   
Welcome to the forum klstalks. At this time my fatique has been bad, it is very hard for me to stand up. I am afraid that my job maybe at risk. I work 10 hrs plus per day, 5 - 6 days aweek. On top of that my wife and I are trying very hard to close our house, so we can move to our new home. Taking care of our children that is still at home and grandchildren, plus her mom and dad needs help.

I am sorry for your pain, you are not lazy...
PLAQUENIL, FLEXERIL, CELEBREX, CYMBALTA, BENICAR, ALLEGA, SINGULAIR, PROSCAR, LEVITRA, METROGEL, PORTONIX, NASACORT, AND CREAMS
Enjoy what you can today and leave the rest for another day.
 
Frank
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 2/2/2008 7:06 PM (GMT -7)   
Welcome to the forum Klstalks!!!

I hope you will start a new topic and introduce yourself. The other members won't likely get to say hello in this topic. Sorry you are having such a hard time. Many of us are able to "pull out" of the fatigue eventually. We each need to learn how to pace our energy and rest so that we don't stay in a flare or cause one. You'll make some good friends here at the forum and its a great place to learn, ask questions and encourage others.

Blessings!



Frank: Its nice to see you post . . . but I'm sorry you are having such extremely full days/weeks/months. That would be rough on a very healthy person. *phewwwww!!!* You must be exhausted!! I hope you are able to take some rest breaks during the day. That sounds grueling.

Some tea for you Frank!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 2/2/2008 8:20 PM (GMT -7)   
I also work full time and spend my evenings and weekends recovering from the week and resting up for the week to come of course some days are better than others. Luckily I have a desk job and work with great people and have a wonderful boss. My hubby does most of the grocery shopping and helps me around the house. I usually try to straighten things up during the week and do the rest of the cleaning on the weekends. Like the others I can do a little here and there and have to rest in between. It's such a pain to have to stop when I'm the middle of something. Like last weekend me, hubby and daughter went shopping and I had to cut it short because I was exhausted. there was once a time when I could have shopped for hours without slowing down a bit.... not anymore.

Day to day I struggle with joint pain (hands, feet, hip and lower back) more than anything, on a scale from 1-10 I'm usually a 6-7. I try to get at least 9 hours of sleep at night and usually sleep in on Sat morning.

I can tell I am flaring by my level of fatigue, mouth sores and GI problems (intestinal and nausea).

May we all have a pain free peaceful sleep tonight!!! Take care all
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds: Imuran, Plaquenil, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


Barbara Lee
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Date Joined Sep 2003
Total Posts : 2889
   Posted 2/2/2008 8:22 PM (GMT -7)   
Hi Hippi:

I feel terrible everyday it seems. I rate my days on how horrible I'm gonna feel rather than is this a good day or bad day. Between the lupus and the MDS, I'm totally wiped out. I've got constant pain that never really is relieved. I'd say between 1-10, I start my day at a 5 or 6 and end my day at a 7 or 8.

As for the fatigue I sleep a lot like I'm lucky if I'm awake 7 or 8 eight hours a day. I never have any energy to pick up the living room or change the sheets on the bed. I mostly sleep and lay around. I do sometimes have to take Nikita out shopping but I'm usually wiped out for 3 days afterwards.

This lupus roller coaster ride is no fun. I'm very sorry that we've all got to live with it. Wishing you better days Hippi. You're in my thoughts and prayers. Hang in there, we're here for you whenever you need us.

Welcome KLstalks this is a great group of people. You'll learn lots of good information about lupus from everyone here. Please post and let us know more about you.

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


Victoria72
Regular Member


Date Joined Oct 2006
Total Posts : 221
   Posted 2/3/2008 6:19 AM (GMT -7)   
Stacie... I swear we must be clones. Anytime you post, I feel as if we experience the exact same issues. I can always tell a flare from the GI symptoms and mouth sores, as well as the spinal symptoms. My pain scale on any given day is 4-6 like the others. I work full time up to ten hours a day 5-6 days a week as well. My coworkers are not supportive, unfortunately. Im in a fast paced IT environment and it tends to be dog eat dog here. On top of the fact that Im getting older (36 in the IT world is over the hill)... I may try to change fields soon. I feel so for PhDoc.... hes the provider for his family and doesnt have a choice in the hours he works. I feel the same way. There are days when I honestly think that this must be what death feels like... and then there are days when its not so bad. Thanks Hippi, for starting this topic.

Blessings,
 
Victoria
 
Mother of four, full time Systems Analyst
 
Crohns, suspected Lupus, Pancreatitis Dec. 2005
 
Meds:  Medrol injections; Plaquenil 400mg, Cellcept, Vicodin, Benadryl, Zyrtec


phndoc
Regular Member


Date Joined Oct 2003
Total Posts : 495
   Posted 2/3/2008 12:56 PM (GMT -7)   
Stacie, I don't know how you do it. Sitting at a desk would make me feel more fitgued. I am so afried that I will have to go inside.
Best to all
PLAQUENIL, FLEXERIL, CELEBREX, CYMBALTA, BENICAR, ALLEGA, SINGULAIR, PROSCAR, LEVITRA, METROGEL, PORTONIX, NASACORT, AND CREAMS
Enjoy what you can today and leave the rest for another day.
 
Frank
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 2/3/2008 1:35 PM (GMT -7)   
Victoria,

I certainly hope that "36 in the IT world is over the hill" is NOT true, as I'm 49 and still working (when lupus lets me) on leading edge research and development!!! LOL.

I certainly admit that keeping up with computer hardware and software is much more challenging than many other industries where methods, techniques, etc are more stable. (Like how much does accounting change from year to year??) Our constantly changing environment is certainly not friendly to Lupus -- hard to think effectively w/lupus fatigue and cognitive impairments!!

I had to take a (longish) break from the stress, and am looking forward to my return! You'll know when your body needs more attention than your mind -- it was very obvious in my case.

Cheers,

Lynnwood, Co-Moderator: Lupus Forum

Dx Lupus since '00, new Dr wants to Dx Fibro instead....
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions



jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 2/3/2008 2:55 PM (GMT -7)   
:-) Victoria, maybe we are twins separated at birth, I am 36 too!!!!!!!!!!!!!!!!!!!! I pray if it's time for you to switch careers that you will know it and it will be a smooth transition, if not you hang in there!!! I've been in stressful work environments in the past and it only made things a lot worse on me. I had to get out of there and I turned around and got a better job. You take care of yourself, I am here if you need to vent!

(((( Frank)))) I have a desk job but I am up and down a lot, walking to the front of the office, to the copier, etc. There is no way I could sit all day and not be able to get up and move around, my hips / lower back wouldn't like that too much. But there is NO way I could stand all day on my feet either.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds: Imuran, Plaquenil, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 2/4/2008 1:58 PM (GMT -7)   
I too know first thing what kinda day I am going to be heading into.
Getting up is Murder and I only get four hours sleep. I stagger, crash into things, mouth is a mess, I feel sick, in pain and the head is BUZZING. When the head buzzes (!) either in the evening or morning, I know for sure I am doing too much.
When I wake, I get up, the pain, the dystonia/chorea jigs and jerks make me.
I tidy and feed the dogs (ONe as from today RIP), and get in the car for college. Driving IS a distraction.
I then collapse in the car on arriving most days as I realise how awful I feel, I may have a weep or a short walk with stick and head into the building.
I want to stay til 3 pm but never do. I leave at lunch time.
I still havent quite grasped the enormity of my 'decline' into severe bad health probs. I still think I can be 'superwoman' and am 16 again.
And I act that way, as for instance I was sawing wood yesterday straight after bringing a friend to two shops a good distance away.
I have 'ants in my pants" I have to keep moving.
Rest/ relaxation/sleep are alien to me. Sleep once was reasonable but not now.
I feel so bad most days I am incredulous.
Sometimes, for psychological reasons I sleep on the sofa wrapped up in soft trows cos bed reminds me of 'sickie'
I prefer being in a room which is not the 'sickie' room and I actually feel better in my mind that way.
I am trying to devise the 'right' programme of activity for the level of illness, and I am trying to take breaks etc and learn to do nothing.
Its all a bit of a struggle.
Pain goes off the richter scale after too much activity, nerve pain.
vision is also poor when very tired.
The posts really helped me understand various peoples attitudes and management plans .
I need to take a leaf outa others books.
Xann
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.
Excema.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream


canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 2/4/2008 6:58 PM (GMT -7)   
Well I hestitated posting this but I actually feel pretty darn good ( knock wood) I am on day 90 of new medication and actually feel almost as good as I did before I got sick. My dx is UCTD and sjogrens and I actually went from thinking I was going to be going on disability at 35 to taking on extra projects at work and planning two major trips. I still can't wear my contacts (stupid dry eye) but if that is the worst thing I have right now eye pain and itching I will take it. And I still get the odd tingles off and on through out the day but I am hoping those will die down as I am on my medication more.


UCTD and sjogrens ( terrible dry mouth) Plaquenil 400 mg with 150mg of diclofenac as needed, all biotene products and refresh liquigel eye drops and now LDN therapy which is a life saver

Post Edited (canuckgirl) : 2/4/2008 7:03:50 PM (GMT-7)


Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 2/4/2008 9:26 PM (GMT -7)   
Hi there Canuckgirl!
What is LDN therapy? scuse ignorence, I am in Holy Ireland and things are different here!
xxAnn
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.
Excema.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream


Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 184
   Posted 2/5/2008 3:33 AM (GMT -7)   
My mornings and days are pretty good but by evening....I'm pretty pitiful.... nights have always been my bad times....
I haven't been working since Aug 2005 and I can tell you that has helped me in lots of ways... I went to Tulsa to my Dr. last Tues...I live in Russellville, Arkansas but lived in Tulsa for a year and the Dr. that I went to is just so nice that I drive to see him.. All of my blood tests were good this time... except the ANA test... He told me he was very pleased and I don't have to go back until July...I think not working is the reason... I have accepted my limits... I rest everyday.... and thank goodness for hot water.... sometimes that is the only thing that helps me.... a big long soak in the hottest water I can stand.....

canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 2/5/2008 9:56 AM (GMT -7)   
Ann, It's low dose naltrexone therapy. It's actually HUGE in Ireland with multiple Doctor's using it. If you do an internet search you will likely locate something on it.
UCTD and sjogrens ( terrible dry mouth)  all biotene products and refresh liquigel eye drops and now LDN therapy which is a life saver


Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 2/5/2008 10:48 AM (GMT -7)   
Thanks canuck!
Now I know, are you in this fair isle of ours?
Love to know a sjogren/uctd here in Ireland.
I dont use biotene, dont like the taste of it.
I use those eye drops either. Got a big book on Sjogrens from the assoc in England and it is VERY good indeed. Taught me a lot.
xAnn
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.
Excema.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream


Harmony
Regular Member


Date Joined May 2003
Total Posts : 56
   Posted 2/5/2008 10:52 AM (GMT -7)   

Thanks for the topic and all the tips in the replies. I am pretty much homebound. I don't plan activities for 2 days in a row. I usually take a trip to see a movie or to a coffeeshop once a week. I find that when I do too much around the house my fever goes up. Does anyone else have this symptom? Thanks for the timer idea Rosie. That might keep me from overdoing it. I try to take a shower every other day, do some laundry, vacuuming, load or unload the dishwasher, just do small things around the house and rest in bed inbetween. Thanks for the naltrexone tip Canuckgirl. I will check that out . . . and Ann Ireland, you are a superwoman! We all are. It takes a lot of courage, determination, every ounce of such limited energy, patience, and fortitude for us to make it through each and every day. Compared to how some healthy people breeze through their days -- we are all superwomen and supermen.

 

 

 

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