Advice for Better Living Archives

I have a problem. I have arthritis in my knees and last winter if I sat too long I was stiffening up. So now I think I'm getting Rheumatoid Arthritis as well. Well they are after me for Jury Duty. I asked my Dr. for a note . You can only get out of it if you have a Dr.'s excuse. My children are grown so I can't use that anymore. The Dr. refused. She said ,&quoT;A lot of people with arthritis do Jury Duty. You are quite capable of doing Jury Duty. Jury Duty is all about sitting.

What do you say to the Doctor? to get them to understand what you are going through physically. If you tell a Dr. your in pain and can't do this or that what they think your lying? There are many things I would like to do with my life and I can't so why should I be forced to do something that I know would cause me severe discomfort and probably a great deal of pain. My friend told me they have these hard wooden benches you have to sit on all day till they call you in. Meanwhile sitting all day in a courtroom for hours I know I can't do.

What do you say to these people? How do you get them to understand?

Thank-you

You may have to spend some time in the court room waiting to be questioned, but, every time I have been called for jury duty, I was
questioned about any condition which would prevent me from giving my full attention to the case. At that time you can mention your pain and how you feel it would be a distraction. -Mary

When you have a chance, I would get a better rheumatologist. My rheumatologist never talks to me that way. In the short term, I would ask your doctor for a note describing your limitations and what accommodations you require. For example, the doctor could write that you have arthritis and must sit on upholstered cushioned seats. And, maybe also that you need breaks to stand and walk around and stretch every hour or whatever's appropriate. Then the judge could decide whether to provide the accommodations or dismiss you.

My rheum. told me the stiffening during sitting is called 'gelling'; and it's common in people with arthritis. I was worried about this same issue re: jury duty (but didn't discuss it with my doctor). I was excused for cause because I'm too opinionated and biased. So, just have strong opinions and biases and disclose them and you won't be serving on the jury.

But, definitely get a better doctor.-Janet

Hi,

My name is Angie. Make you RA Dr take a bone scan. Mine did one in
August and found deterioration in my hips and spine which explained why
I could not sit for long periods of time.

Hope this helps.
-Angie

Ohhh tough one! How would you handle it?

Who else out there had acute onset RA? I started a year ago at age 59....I would like to compare notes with someone else

Yes, it blew in the window one night 3 years ago! I was perfectly healthy, and wham ! I was socked with it overnight! Iam a nurse and puzzled as how fast it set in! I am 56 years old, and depressed, as I can't work anymore, tore up the tendons in my ankles, and had extensive surgery to both feet in the last 18 months! I think its strange how fast, and yes, I mean overnight this RA set in! -Linda

I was 17 when mine hit. Out of the blue... at first had a few joint aches... but figured was due to over stress in gym at school. Then one night about a week later, I woke up at 11pm, and couldnt walk. The pain was so intense all I did was lay there and cry and cry and cry. It shocked me and my mom cause I was so young. I went to my pediatric doc that I was still seeing at the time, and he said I had polyarticular arthritis, with possible acute onset of RA. Brought on most probably by the gland infection I had a few months prior. Imagine my surprise and dismay, for once the things I could do were not longer possible. Overnight is the way I would describe it Linda. And like anything else, I've learned you learn to live with it. Hugsss hon -Christine

Hi my name is Jeanne, I'm 47, and have had RA since 1988. I'm also a nurse...but no longer working. Yes, just like you I woke up one morning with an inflamed, painful swollen knuckle and within 1 month EVERY joint in my body was inflamed. I also was devastated and shocked at how fast this disease invaded my body. In 1988 there weren't the drugs and treatments that are available today. My rheumatologist had me on every drug available but nothing worked for me, except for the 'dreaded prednisone';...I also use to have different joints aspirated and injected every doctor visit (my only source of temp. relief). One day at work I was drawing up an injection when the tendons in my right hand ruptured (from all the inflammation) which led me to have my right wrist fused. I also have had synovectomies of my knuckles and had my tear ducts closed to help with dry eyes. All those years I felt like the world was going on without me as I sat in a recliner chair wrapped in an electric blanket suffering in pain. I had three young children at the time. Now lets jump forward to 1997 when I entered a clinical trial for Enbrel (my miracle). This biologic drug has given me my life back ! Other then old damage to my joints...I feel terrific. I now longer have flares, swollen joints, fatigue, or stiffness...I feel 'normal' again. I only wish this was available back when I got sick, then I wouldn't have the damage to my joints...plus I wouldn't have missed so many years of living.

If I can be of any help at all to you just let me know. I will gladly answer any questions you may have.

I wish you the best of luck in finding something that will relieve your pain and suffering. No one understands unless they have been there themselves.

A gentle HUG...Jeanne : ) jmbuckingham@home.com

Anyone else with acute onset RA!

I<a name="mommy">'m 24 and just had my first baby 9 weeks ago. Six weeks to the day after she was born my arthritis flared like nothing I have ever experienced before. Sometimes I cant hold her to feed her. Has this happened to anyone else? Has anyone taken any drugs while breastfeeding?

I have 2 children, ages 2, and almost 4 yrs old. I breastfed both, Jesse
only 1 month, but Joel, my youngest for 1 year. I had not been diagnosed
with FMS back then, but I had been having terrible sinus infections, and
sinus headaches every day. You would be surprised to know how many of
the medications out there are safe for your breastfeeding baby. I was
using my pediatrician as a resource when my doctors prescribed new
prescriptions. Then, I realized quickly that my pediatrician, wonderful
doctor though he is, did not seem to be up-to-date when it came to what
kinds of medications are compatible with breastfeeding. I will tell you
that pain medications such as narcotics are not a problem. A small
amount gets into the breast milk, which can make your baby sleepy, but as
an OB nurse who works the postpartum floor, the standard medication we
give our new mommies for pain is percocet. (oxycodone). At such a young
age, (newborn) it is difficult for us to know just how much the narcotic
affects the infant's alertness. Newborn babies are sleepy anyway. But
in my experience, I had taken lortab, tylenol #3, and percocet at various
times during the year I was breastfeeding my Joel, and it is easy to tell
if a medication is affecting a baby who is older. The medication for
pain that I took seemed to have no affect whatsoever on my baby. I even
had surgery on my sinuses when Joel was 7 months old, and breastfed him
later that same day, and he was fine. I of course, had checked with the
doctor and the anesthesiologist before doing this. Some antibiotics are
not compatible with breastfeeding however, and once when I was on a
two-week course of a strong antibiotic that could have potentially
affected his bone development, I pumped my milk and dumped it. I had
some breast milk saved in the freezer which we used during this time, but
we also used formula. If your pediatrician cannot give you up-to-date
information on medications that are suitable to take while breastfeeding,
(the doctor may just say not to breastfeed while on meds, without
consulting a book, since most pediatricians think that there is no data
to support the safety of such medications for the baby) However, you may
contact your local La Leche League Leader, who should have a book called
Medications and Breast Feeding. This book has very up-to-date info on
the types of meds that are safe when breastfeeding. Most studies show
that such a trivial amount of most meds actually show up in breast milk,
that it will not harm your baby. However, nearly all meds cross into
breastmilk, and there are some meds that truely are not safe for
breastfeeding. Your pharmacist may also be able to help answer some of
your questions about the meds you take. There is also a doctor out of
Canada, Dr. Jack Newman, who has very good information about medications
and breastfeeding. He runs a breastfeeding clinic, and I heard him speak
at a nursing (RN's, not nursing moms) conference, and he was very
knowledgeable. I hope you have not stopped breastfeeding before
researching carefully if the meds you take are safe for your baby or not.
Breastfeeding is of course shown to be best for the baby, which I
whole-heartedly believe, since my child who was only breastfed for 1
month had a lot of colds, croup, and stomach viruses during his first 2
years of life, and my baby who breastfed for 1 yr. has rarely been ill,
even though he was born a month premature. In addition, breasteeding is
good for the mother. While you are breastfeeding, your body releases
oxytocin, and other hormones which help you to relax, making you feel
happy. This was one of the happiest times of my life! Breastfeeding
also helps to protect you from developing breast cancer in the future.
And, last but definately not least, you and your baby will form a
wonderful bond that will last a lifetime. I wish you luck, and
congratulations on your new baby. P.S., if you have already quit
breastfeeding, and it was recently, it is possible to resume
breastfeeding, if your baby will take to your breast. The body continues
to make milk for a long time after breast feeding is stopped, and you can
increase your milk supply by pumping, using a supplemental nursing system
while nursing the baby, which is a system that will allow your baby to
drink formula through a tiny tube that can be placed along your nipple,
so that while your baby is breastfeeding, (info on supplemental nursing
systems are also available from La Leche League) and stimulating your
body to make more milk, the baby is still getting an adequate amount of
milk. There are also two medications that may enhance milk production.
The first one is called Reglan, generic name metoclopromide (commonly
used for nausea, strangely enough), and is available in the U.S. with a
prescription. The other medication is only available in Canada, and it
is called Dom Peridone. I do not know anything about this medication,
only that I knew a woman in my LLL group who used it so that she could
produce milk for her adopted child. She had it sent to her in the mail
from Canada. Dr. Jack Newman would be able to supply info about that
medication, if you have a web site to get a hold of him? I am sure you
could find a web address using a search engine, since he has published
books and articles about breastfeeding. I hope this info helps. -JK

Hi, I have one daughter aged 17 months. We are still nursing. There are definitely some drugs you can take while breastfeeding. For info on specific drugs you can look at Dr. Hale's website.
http://neonatal.ttuhsc.edu/lact/
If you can't nurse, don't feel bad, but don't give up without trying. Breastfeeding has tons of benefits, including giving immunities and it's so much easier (once you get the hang of it). With arthritis, you want to try to do what's easiest while still taking care of your child. Okay, I'll get off my soapbox now. :) Good luck! -Marsha

Hi, I have two boys ages 5 and 2. &nbsP;I felt great during both pregnancies and for a few weeks after. &nbsP;My RA did come back hard at about 4 - 6 weeks also. I think it had something to do with my hormones and all that is going on in your body. &nbsP;I knew I needed to get back on medication right away so I chose not to breastfeed. &nbsP;I think that helped me a lot. &nbsP;Is breastfeeding best for the baby? Sure, but so is having a Mom who is able to take care of the baby. &nbsP;I know there are medications you can take while breastfeeding, but not sure which ones they are. For me, I wanted a sure thing and wanted to get back on the meds that I knew worked for me. &nbsP;I hope you can find some meds that will work for you and allow you to continue breastfeeding if that is what you really want to do, but also, please take care of yourself also. &nbsP;If you need stronger meds and can't breastfeed, don't feel guilty about that choice. &nbsP;-Sue

Let's hear from the rest of the Mommys

Anyone else feel like they have the flu?

I too have flu like symptoms up to 4 days after taking methotrexate. I feel like I have PMT. Feelings range from tearfulness to Feeling like exploding -Rosie

Hello - I've had RA x 16 years. Am on methotrexate, Arava, naprosyn, prednisone and folic acid which make my joints feel pretty good! But, I was very interested in your description of 'flu like' symptoms. I, too,
experience those waves of nausea, midchest discomfort, headaches and generally feeling very 'flu like.' It occurs nearly daily and once in a
while the waves occur multiple times each day. I have a doctor's appointment tomorrow and hope he has some answers.
At least you know you're not alone and if we're lucky, some one out there may have an answer. Good luck! -LJ

I< about to start on Methotrexate to combat the JRA I've had since I was 8. I'm 27 now and I'm looking at this website: http://roadback.org/Index1.html
Has anyone tried using antibiotics as treatment?

I'd also like to hear from people who have had JRA and have beaten it
through use of methotrexate or other DMARDs. I have yet to hear anyone
completely free from RA from DMARDs and would love to hear some
testimonials if any exist.

I would also love to talk to people around my age with JRA or RA. I'd like to see how my lifestyle differs from other people afflicted with the disease. I'm fairly active and mountain bike, hike, jog, among other things and would like to see how others cope with the daily ups and downs of this disease.

Thanks,

Matt

I came down with RA in March of 1983---every bone, joint, muscle and tendon all at once. I could do nothing except struggle to the bathroom that was only 20 steps or so from the bed. I couldn't even turn the dial on the TV in the bedroom (this was before remotes or they were too expensive, I can't remember) to change the station. I tried EVERYTHING but nothing seemed to work. I was diagnosed at RAFB and they sent me to a RD---the first medicine he gave me was HTCZ (a diuretic) to see if he could get rid of some of the swelling. Well, 20 minutes after taking the first pill, my hands were tingling and I couldn't breathe; I called the DR and told hime what was going on and did he want me to come back to his office. He said no, which hospital did I want to go to. I said the base and he said he'd call and tell them I was on the way. They said I was turning blue around the mouth and eyes and I would have been a goner in another 1/2 hour. I went to him the following week and he put me on something, I can't remember what, but I wanted to commit suicide--so I stopped that. Went back to him the following week and he gave me something else--I hurt worse after taking it than I did before. Well, 3 strikes you're out so I changed RDs, drove 2 hours to a RD in Atlanta. Bless his heart, he tried me on something different every 3 weeks trying to find something to help me. He did put me on Prednisone and that is what probably saved my sanity. NOTHING worked for a year. Then he wanted me to go on MTX (Methotrexate). I told him I would not take it unless I couldn't put one foot in front of the other. I had taken it in the 60's and early 70's for Psoriasis. I went to work one morning and all of a sudden, I couldn't breathe. I was taken to the base ER and they had me on oxygen while they took Xrays of my lungs. I heard them call a Pulmonary Specialist and they told him they were sending me by ambulance and wanted him to do a &quoT;scope and a biopsy&quoT; of my lungs as I had spots on one side (Yes, I was a smoker.) When the doctor came in and he saw I had Psoriasis, he asked if I had taken MTX and after finding out I had, he said he wasn't going to do the scope and biopsy, that this was a side effect that they didn't know about back then and that I had Pneumonia (in Sep 1982).Well, I had made a pact with God that if I was ok, I would quit smoking. I was not raised with a loving and forgiving God, I was raised that if you did wrong, God would get you! So, I quit smoking even though I had 9 cartons of EVE cigarettes in my freezer. The were not sold at my base in GA, so when I went home to SC, I would go to an AFB and buy as many cartons as they would let me have, then would go 44 miles away to an Army base and repeat my buying there and put them in the freezer to last me till I went back to SC. Boy, I went way off the mark. Sorry. Since I wouldn't do what the RD advised, I felt like I was wasting his time and my money so I went back to the base. I saw a new doctor (he sat behind me at church, Coincidence?, I think not) and after going over all my records, he put me back on Gold even though I had mouth ulcers when put on it earlier. I was on Gold for 8 or 9 years.
Eventually I did go back on MTX and have now been on it 7+ years. However, I was reading the Alt Support Arthritis and two educated women were on the Antibiotic treatment, one from Texas and one from NC. They were very positive about it and I emailed them and they sent me some info and I ordered the book, &quoT;The Road Back&quoT;. I read the book and highlighted the things that I thought pertained to me---and one was having pneumonia prior to RA. I took the book to my Internal Medicine doctor and asked him to read the highlighted portions if he read nothing else and I badgered him to put me on Minocin. He finally read it and agreed (probably to shut me up) to write the prescription. I knew from the book that as long a time as I had had RA, it would take a long time, probably years, for me to see anything positive. I guess I started the therapy in 1993 or 1994. Then several thing happened to my body/eyes and the doctors in my small town disagreed with each other so I went to Mayo Jacksonville (the first time was in 1995 and the RD poo-pooed my taking Minocin). I went back in 18 months and he asked me how bad my pain was on a scale of 1-10. I though and guess what? I had NO pain! It had been so gradual, that I didn't even realize it. Yess, I still have a little pain if I over do but it is gone overnight. Mostly it's my hands and feet---like when I drive 615 miles to spend Christmas with my oldest daughter and her familyand make it in 10 hours. Then my left wrist especially is tender, but I rub Sombra on it, take a darvocet and go to bed at bedtime and when I wake up, I am a-ok! In fact, I went to May Jacksonville 4 Sep and the same RD I've had from the beginning told me he had other patients on Minocin that had been relieved of pain also. HOWEVER, I still take MTX and Enbrel. This cocktail seems to work for me---Dr Persellin says I have great mobility for the length of time I've had RA and am in great shape for the shape I'm in but that my balance has not gotten any better since 1995 (I took some sort of motion/balance test and if they hadn't had me on some sort of hoist, I'd have been flat on my face!

Buy the book, read it and highlight anything that pertains to you. If you think it does, try it, but don't think the results will be overnight---you've had it a long time also. I just know I look like a gimp, walk like a gimp, my hands have had knuckles replaced and I have swan deformity in my fingers but I can still use them and I don't HURT though I can remember when I did and I hope to never go that way again! GOOD LUCK!
-Marty

Anyone have any thoughts for Matt?

I am a 22 year old woman, newly diagnosed with RA, I am on Azulfidine, Celebrex, & a synthetic steriod...my questions is about hair loss. I am experiencing great hair loss, creating a large bald spot, which is getting harder to hide. The drugs seem to be controlling my pain, but I wonder about the hair loss. Is this something else I must learn to live with? Will it grow back? All the info I look into never seems to address this topic. I look forward to hearing from you all. Thanks.

hi, i am on arava,methotrexate,prednisone,and gold shots.&nbsP; since i started arava,i too have been losing my hair.&nbsP; my dr. thinks because i feel good that i shouldn't let a little hair loss bother me.&nbsP; i feel i'm losing more and am concerned. i cut the arava down to 10 mg. a day,from 20,&nbsP; and that was better for awhile,but now notice more loss again. what can we do?,-jeaane

I am sorry to hear about your hair loss. Just never seems fair. One
suggestion I have is to take folic acid 400mcg daily. This minimizes
the side effects of the medications, including hair loss. Best wishes!
LJ - RA x16 years.

Many people swear by grapeseed extract for hair loss. You can get it at a health food store. -KJ

Anyone else losing hair?

I'm sending out my resume to find a new job. How much/little should I tell those who interview me about my physical limitations?

I haven't had to look for work since being diagnosed with RA, but have
thought about it a great deal. I decided that if I was looking for work, it
would be honestly and truthfully about my condition. I had to leave my job after many years due to RA. I guess it would depend on your condition, how severe it is, and how much you feel it will impact your ability to work. If you are wanting to test yourself, I don't think I would mention it. I would go for it, and see how it comes out.
-Melanie

Any more advice?

I am 68 years old.

My Dr. has diagnosed me with osteoarthritis in my hips. I'm wondering why it is that when I go to bed at night I don't have pain but when I awaken about 2 AM and get up to the bathroom, then the pain begins and I can't go back to sleep!

We have a Simmons Beautyrest mattress from Sears for which we paid $700.00, thinking it would be the best.

I use the air mattress advertised by Paul Harvey so that I can adjust the bed as needed, depending on how my hip feels.  I also sleep on a heated mattress pad.  Sometimes I wake up in the night with pain, and I can turn it a little warmer, which helps relieve the pain and allows me to get back to sleep.  I have the problem in only one hip, which I don't sleep on, but if I'm sleeping on my other side I try to put a small pillow between my knees for more support. -Peg

Hi,
I've had back surgery a couple of times, plus developed arthritis in my lower back and hips. Your pain may come from sleeping in the wrong position. I use pillows between my knees to make sure my spine is aligned at night for when I lay on my side. When I lie on my back, I use pillows
behind my knees to raise them somewhat. This takes pressure off the lower lumbar spine and the hips. I changed mattresses as well and use a firmer mattress at this point. I also got a list of exercises from my neurologist to work at strengthening the muscles of my back to help support the bones more. And last, but certainly not least, I use Ultram or Flexaril to help with pain control when it is there before I try to go to sleep. I don't know if any of this will help, but I do hope you get some good sleep soon!
-Melanie

Anymore Slumbering Advice?