Concerned about your weight?

[Katybarstool]

Hi Teresa

I can understand having energy for nothing but work. Believe me, I have had many evenings where I have fallen asleep straight after dinner, only to wake up and go to bed. However, I have also had some good times when I have managed not to sleep until 10 pm and even, very occassionally, when I have had an evening out .

The thing I have realised is that I now have to make decisions about what I am going to do with the energy I have. As I'm the main earner, that usually menas that work has to come first, and anything else is a bonus. Sometimes though, I will arrange to go to a social event and then book the following day or two off work as annual leave. That way, I feel that some of my needs have been met, without putting the job at risk.

I have been off work for nearly two weeks after some minor surgery, and am due to go back tomorrow. It has been wonderful having time to lie in at mornings and just plod along doing a few jobs and resting, so much so, that I'm dreading getting back on the treadmill tomorrow.  Although it will be good seeing my colleagues, I will be so relieved when my first day back is over.

Teresa, I hope you soon get some days when you can do more than work and sleep. Do you have any flexibility with your annual leave/wprlomg hours, so that you can pace yourself more?

I hope you get  some relief from the tiredness soon.

Kathyx

[peacefulstorm]

Hey there Teresa,

I am in amazement actually, I'm very proud of you and others here that can work with the pain and issues we have to face on  day to day, if not even hour to hour day.  I am sorry that you are so tired. I feel the same way and I cant do anything right now because of my back.  I need surgery so all of my joint/muscle pains are getting worse because I cant do anything.

Hang in there love!

[eyeamdry]

This is the first time I've read this thread!  I see a whole bunch of us trying to accomplish the same thing, while we must take meds that cause us to gain weight.  I've been on Lyrica for a few months and have been eating through cardboard packaged and wondered why.  (not really)....I have nothing to add except something for us gals who are 5'ish and size 14ish as far as clothes that fit.  I buy a lot of Alfred Dunner clothes, or at least did while I was working. I can get most of this stuff in petite and it doesn't require hemming.  Alfred Dunner is not the high fashion we see on ELLE magazine, but most of us are not those size 3-4's either.  Alfred Dunner clothes can look a bit dowdy, but if you look around you can find some pretty nice stuff. 

I used to work with a lady my size and she always wore Alfred Dunner stuff too.  She then lost about 40 lbs and I'm not sure what she wears now.  Anything that can help me from hemming pants, or paying to have it done is a real treat.  Lucy

[TerriJ]

I'm a newcomer here and new to SS. Since I had surgery that put me into menopause I have been gaining weight.  Now the neurologist wants to put me on Neurontin.  I don't want to have to go out and buy bigger pants again.  I don't eat a ton either, so it just seems unfair.  I can't imagine what Neurontin or Lyrica will do.  I don't feel well enough to do heavy cardio exercise.  The only thing I do pretty much every day now is a combination of stretching, yoga and qi gong.  If I don't do this I am so stiff I can hardly move, but it is not enough exercise to burn any calories.   I'm not tall either, barely 5'.  I hope I dont' turn into a bowling ball. 

Terri

[Nadmcd]

Hi Terri,
    I can't relate to the menopause stuff; other than to know when It's best to let my wife have her space .  I have been on Neurontin 300mg 4 times daily since 2004.  I have not suffered any weight gain, although my best friend, (he is also male) said it did make him eat everything in sight at least for the first few months.  He did say, that after awhile, the side-effect mellowed out.  As far as side affects go, this drug has very few.  It is extremely short lived in our bodies.  For most people the dosages taken today will be gone after after a few hours and in almost all cases it will be gone overnight.  I don't know if any of this is of value to you, but you may use this info to talk to your neuro about how or when to take your doses.

[TerriJ]

Thank you so much for the information Nad.  I do have a concern with how Neurontin and probably Lyrica too are processed through the kidneys.  I have serious kidney damage in one kidney and some reduced function.  I think there is some kind of chart the neurologist can use to gauge the dosage.  So, basically Neurontin increases your appetite?  Did you have any edema from it?

Thank you again!!!

Terri

[Nadmcd]

    Terri, I had absolutely no problems.  I only experienced 1 side effect, that was for the first few weeks, I had some increased energy.  I didn't mention it because it didn't last long, and I wasn't sure if the energy just came from my pain level decreased.
    I haven't had any experience with Lyrica, but I had you don't find it problematic. 

Good Luck
Nadmcd
Dan

[TerriJ]

Thank you Dan!

[Michele T.]

I have problems with my back and am in a lot of pain. I love to walk and have wii fit. Now I can't even use the wii so I gave it to my daughter until I'm better. I have gained weight and feel like...SCREAMING!!! After I get the nerves burned in my back and the epidural blocks done I'm going to be WALKING!! Anyone have any advise for right now?? I'd really appreciate it

[hoping]

I have lost about 45 pounds since experiencing worse symptoms and remain undiagnosed, though have appt. with new rheumy in about a week.

I have mentioned the wt. loss to physicians and everyone of them has not seemed all that concerned, just nods and makes a note of it.  A month ago, I was hospitalized and on high dose steroids and other than gain facial wt. I only gained maybe five pounds and it's been about a month but I'm now down to 5mg just today.  Prednisone has always put the wt. on me and impossible to shed it.  A year ago, a neurologist took me off my 5mg of daily Prednisone and I figured that's why I was losing wt.  But this much wt.?   I also reduced Lyrica from mega dose of 900mg/day to 600mg/day sometime way, way back, and figured maybe that played a role, but I still continue to lose.

Concerned,
Karin

[JenJen]

I hear you Karin.  I have lost 20 lbs. since the end of Dec.  Normally, I would be thrilled by that--before my tongue and swallowing issues I had said this is my year to lose 40 lbs. (also my year to turn 40!)   But this has come off fast and not in a healthy way.  Now my focus is not to lose much more.  Boost and homemade smoothies with protein and cream of wheat are my staples these days.  Yuck. 

[Tinker]

I am tired of being fat.  Gaining 15 lbs. with no change in lifestyle has me baffled.  I can't exercise due to polymyositis and overwhelming fatigue.  Friday I am going in to have lipotropic injections.  My realtor told me about this and all the realtors in her office have lost lots of wt.  My friend has lost 20 plus lbs.

These injections are amino acids with B12. I already take B12.  I googled these lipotropic injections and can find no side effects.  My daughter just started this program and has lost 3 lbs and inches as her clothes are loose.

Gotta do something.  I will see a doc beforehand and have blood work and a complete physical. 

Sure hope this works.  I'll keep you posted.

[kathyl]

I have been reading this with interest and noticed that a couple of people mentioned losing weight without trying.  This is a very significant symptom which I recently found out.  I went from a size 12 to a size 6 from August to December with no dieting or exercise.  My doctor said my weight was good but let's do an abdominal ultrasound anyway.  So I had one and followed up with a Gastroenterologist.  I thought he would just say drink Ensure or something.  But he said, "Now don't be scared, but the ultrasound showed a lesion on your pancreas."  I read a bunch of stuff and this can happen to people with Sjogren's syndrome.  I have to have a Cat Scan probably tomorrow to see what the lesion is.  I'm not scared but I'm having trouble sleeping.  Anyway, sudden weight loss in Sjogren's syndrome when you are not trying is a significant symptom.  If this happens you should see your doctor.
Kathy L.

[hoping]

My primary doc recommended  a complete physical, pap, and mammogram as I was due for one anyhow.  We'll see if that leads any further.  The rheumy was very concerned about the wt. loss and was going to call the GI doc. that did my upper GI.  Seemed way more concerned than any other doc so far.

People would say, "oh you've lost so much wt. you look great." BUT I feel awful, so wt. loss, and dropping a couple sizes, may look good on the outside, but it is not necessarily a good thing when you lose it quickly without trying.  If I were to suggest the pancreas cyst thing to my primary doc he would just dismiss me as reading too much.  I already suggested the kidney cyst from MRI finding and he dismissed any followup CT or ultrasound.

Karin

[kathyl]

Hoping,
I know exactly what you mean.  People tell me they are so jealous about my weight loss.  But when I get up in the morning I have to sit down to take a shower and sit down to dry my hair.  I work and I sleep.  I have problems with getting full quickly and feel nausea.  I lost 20% of my body weight or 30 pounds.  It took until I reached a 30 pound weight loss before my doctor became at all concerned.  Hopefully it is only a cyst but unfortunatley if it is a tumor it has to be caught early.  The survival rate is abysmal if the tumor is malignant.  The GI doctor moved very quickly on setting up tests when he saw my ultrasound.  I feel like my regular doctor is not well versed in the complications of Sjogren's syndrome and I have to have a significant symptom to get any attention. 
Kathy L.