Advice for Better Living Archives

Are there any particular foods or food groups that should be avoided by Arthritics? Are any foods more beneficial than others?

Citrus fruits. A church and high school sell them from Nov thru Feb as a fund raiser. I was buying oranges and grapefruit by the big box thinking that would help keep weight down. I found that I hurt much more when I bought these boxes than when I didn't. So I quit eating citrus long before I read that citrus could trigger reactions in some arthritics. Arthritis Insight Member Marty

Potatoes. In normal amounts they don't bother me, but if I make a pot of potato soup and eat it everyday for a week, I will flare. Never fails-and I just love that soup!! Arthritis Insight Member Tina

8/28/00

Are there any attractive shoes that will not hurt my feet? Any specific name brand? I am a 24 yr old attorney and have a horrible time finding shoes that don't hurt my feet that look like someone my age would wear. HELP!!!!

My doctor recently suggested I look into a shoe made by a company named BORN. Oh! They're fabulous! I'll never put anything else on these poor arthritic feet again. They're very stylish and ooooh feel soooo good! I'm 34 and don't want 'old lady' shoes. These are perfect. I found mune at Dillard's, but can also be found at other higher priced store chains...Macy's, Foley's,
Nieman marcus, etc. I paid $91, but they were really worth it! Hope I helped! Be well. ~Chriselda

There is also a brand name 'Clarkes'. Similar to Birkenstock but no breaking them in-- no 2 weeks getting your feet to fit them--you put them on and immediately they feel GOOD and you can walk comfortably. Larger, good, department stores carry them and also QVC. My oldest daughter lives in Homestead Florida and buys them on sale---she automatically goes to the shoe dept every time she shops. She also looks for them when she is on vacation. She visited me in August after a week's vacation in upper SC-lower NC where she found a pair on sale---they were the usual brown sandal. While visiting me, she took them to the shoe shop where I have taps put on all my shoes because I don't pick up my feet like I used to. Since my SAS or SoftSpots that I wear with orthotics are never on sale, the taps are a lifesaver. My #2 daughter is a chiropractor and I see her Mon, Wed and Fri afternoons. I have much more flexibility but she fussed at me when my heels were worn down. Said that is why I wouldn't stay in adjustment besides my muscle/tendon laxity. She suggested I wear a lift in the shoe that was worn down the most (seems I drag one and not the other though I don't realize it) and have taps put on shoes BEFORE I start wearing them. It does make them last longer and I don't get fussed at (as much). Well, back to the shoe shop, they do not dye shoes anymore but do still sell the dye. She bought black dye, put masking tape where she did not want the dye and they came out beautifully. She mentioned that she has worn them several times and they look like they were bought that color. Sorry for the rambling! Arthritis Insight Member Marty

I also have arthritis in my feet. I was lucky enough to fine a shoe store that has stylish orthopedic shoes. The company that makes the shoes is Cheresia located in Germany. The name of the shoe store is:

Kaden Shoes
2747 Phingston Avenue
Glenview, IL 60025
847.564.7788

Kaden Shoes is a family owned business. I have purchased shoes from them for the past 20 years. If you call them, I am sure they will be able to send you a brochure. Or possibly tell you the name of a shoe store that carries these shoes that is located near you. Arthritis Insight Member Lynda

I have found that Easy Spirit, "Looks like a shoe, feel like a sneaker" is true. I have been wearing them for years now with no problem. Can't wear heels but I can buy a pair in white, black and red to match what I'm wearing.
With my toes all dislocated and large bunions the shoes are still comfortable. Linda B.

About a year ago I purchased a pair of Birkenstock shoes from Birkenstock Express I wear them everyday to my job in a factory and have found them very helpful. The company will send you a free catalog and check their sale pages on the internet. I got mine on sale from the internet, they are more costly than other shoes but after 4 operations on my feet I wanted something I would not have the pain with. Best of luck, Arthritis Insight Member Alberta

VERY good question!! So tell us gang, where can we find shoes for these arthritic feet that don't look like the ones grandma used to wear?

8/21/00

**Please note that everyone reacts to medications differently, you cannot base your decision solely on the experiences of others. Educate yourself about all aspects of a medication before making a decision.**

I think it's obvious from the above responses that we need to hear about your experiences with Arava.

I have been on arava for a month now. I am 24 years old and have incresingly worse symtpoms. I was stiff in the morning for a few hours, and hated getting up. Now I have no stiffness in the knees. It is wonderful. A miracle. I almost feel as if I dont have RA anymore. I only hope it lasts!!! Arthritis Insight Member Katherine

My Doctor started me Arava last Wednesday, Aug. 23rd for arthritic cysts on my left hand that swell and become extremely painful. The way I understood the drug from my doctor, Arava works in the body similarly to gold shots or predisone. She said if Arava does not help my cysts, I will have to go back on predisone.

I'll keep you posted and let you know how it works for me. Arthritis Insight Member Lynda

I started Arava 6 weeks ago, after 8 months on Azulfidine, and failing Minocycline. Aside from a bad reaction after my 3rd loading dose (100 mg) of Arava, I am feeling great. Now I vary my dose --one day 10mg, the next 20 mg. My joints hardly act up, my fatigue is better, my carpal tunnel is better. I haven't felt this good since before I was diagnosed with RA, in January of this year. Good luck, hope it works for you too. Arthritis Insight Member Janet

I tried Arava for a few months last year, and didn't think it really helped that much. I continued taking large doses of Darvacet and 5 mg prednisone and resting and pacing myself, etc. I stopped the Arava. Then, my flares started again and the pain was more intense and frequent after stopping Arava. So I started again this year (May, to be exact) - on MOST days I am down from 6-8 pain pills (Darvacet) daily to 0-2 pills a day. I continue to take 5 mg prednisone daily, but the Arava really seems to be helping this time. I'm hoping for a remission THIS time - I've not had one since diagnosed with RA in 1992.-Arthritis Insight Member Kate

8/14/00

I have recently been diagnosed with RA and put on VIOXX. I'm about to get a script filled for Minocycline, because the VIOXX doesn't seem to be doing helping with the pain. I was wondering if anybody has any advice about what I should expect. How long will it take to start to feel any better? I'm only 26, and I feel like I'm about 95. Also, do you have any little secrets to stop the aching? Almost every joint throbs at one point or another during the day and especially at night. It's driving me crazy. I'm about to start PT, so hopefully that will help. Any advice you can give would be greatly appreciated. Thank you so much in advance.

I was on Vioxx for about 3 months, it worked wonderful for my OA, but started having water retention bad in my ankles and legs and my blood pressure got high, the Dr. took me off and has put me on Mobic twice daily, it hasn't helped at all. I also gained about 15 from the Vioxx and still having a time getting it off. Hope it works for you! -Arthritis Insight Member Wifey

I am not on Vioxx, but my pharmacist was telling me about Mobic. It is seemingly the equivalent of Vioxx, but 1/3 the price because they do not do the amount of advertising that Vioxx does. -Arthritis Insight Member Lucian

I am just beginning my third week of 12.5 mg/day of Vioxx. My rheummy said it usually works by the 2nd or 3rd week at the latest. I haven't gotten anything from it (side effects or relief from pain!). I tend to take a couple rice socks to bed with me each night. When things are at their worst, I nearly use mineral ice as a lotion. That gets me through the night. The thought of something cold sounds terrible usually, but sometimes it's good for bigger joints like my hips and shoulders.-Arthritis Insight Member Aya

I have been told I have RA and osteoarthritis by my docter and the tests indicate it by a blood test and a bone scan. I was not able to walk for pain in the bottom of my feet - both my feet were swollen all over including parts of my legs. In addition my hands were swollen and hurt. I did not have thumbs any more - just huge lumps. Any way the first of May 2000. I started on Vioxx 50 mg once a day and Plaquenil 200 mg twice a day. I can now walk and almost wear most of my shoes for a short period of time. My hands only hurt some times and my thumbs look like thumbs. I feel very lucky to be responding so well and only hope I continue. I just wonder if I have to stay on these meds always!? -Arthritis Insight Member Patricia

Saw the notice re Vioxx. I was put on Vioxx for RA and it appeared to work ok, however, my blood pressure went so high the Doctor has taken me off it and I am back on 5mg of predisolone and Orudis SR. I go back the specialist on 1 September so will be interested to see what is next. Vioxx has only been in Australia for about 6 weeks so it is very new here. The next step my specialist wants me to consider is "Arava", but like Vioxx it is very new and I am must reluctant to try it. Has anyone tried it and if so how did you go. -Arthritis Insight Member Dorie

I am 30 years old and I was previously on Vioxx. It was one of the only NSAIDS that helped with my pain but the side effects were not worth it. I gained over 20 pounds of fluid in only a few months. I started having Tachycardia and hypertension. I am an RN and I know several people that this has also happened to including my mother. I am now on Mobic. It does not control the pain as well but,I have not had any side effects yet.-Arthritis Insight Member Melody

Hi everyone,
I was put on Vioxx but unfortunately it made my blood pressure soar. My specialist wants me to think about Arava but I am not too convinced about that med yet. Incidently, I started on one Vioxx a day and that was not enough so tried one at night and one in the morning but it did nothing for me. Hope the Vioxx works for you. -Arthritis Insight Member Beverly

8/10/00

I've been diagnosed with Lupus for about 8 months. My employer is not aware that I have any health problems. But now, the pain and fatigue are starting to affect my performance. Should I tell my boss about the lupus? I am afraid I might be fired or treated poorly.

I don't really have an answer about to tell or not to tell but let me share an experience with you that may help you decide. When I first became ill in 1992, the doctors couldn't decide what was wrong with me. They send me round and round the doctor circuit and eventually sent me to a shrink. This was very humiliating as I KNEW something was wrong but if the doctors didn't believe me how would my boss? So I took a leave of absence and used my son's school performance or lack of it as the reason. I never returned from that leave of absence as I only became more and more aware that I could not work at that job. Over the next few years I worked in a similar field part time and by 1996 I was unable to work at all. In 1999 I was awarded disability back to 1997 however this is a very small sum compared to the disability I would have been entitled to if I had stayed with the company I was working for as they had an excellent disability package and I was making awfully good money at the time. I guess my message it to look to the future in making this decision. Make sure nothing that you do now will cut you off from benefits you deserve.
-Arthritis Insight Member Diane

Yes, you should tell your employer, but first discuss with your doctor all the aspects of your illness (be sure to take lots of notes), list your meds and whatever any other treatments if any that you will be going thru. Be honest with your employer about your course of treatment and what your goals are. Next I would go over a list of your job responsibilities and focus on any problem areas that your illness might effect and be prepared to offer solutions to counteract these problems. When you have all your notes prepared set up an appointment with your boss for a time where there will be no interruptions and you two can discuss this. Education is the key and if you are well prepared even the most hard-nosed employer can see where you are coming from and understand that you are working to do your best. Good luck.
-Arthritis Insight Member Vicki

Hmmmm! Should she or shouldn't she? Let us know what you think.

8/3/00

I was diagnosed 6 months ago with RA. I too find it extremely painful at times but I was fortunate enough to be referred to a wonderful rheumatologist and the treatment he is using (Arava) seems to be working so far. I was also put on prednisone after much resistance but an inability to tolerate the initial pain, but am gradually being weaned from that (down to 2 milligrams!!!). I am being told I should apply for disability but do not want a long drawn out fight with Social Security. Can someone out there tell me of their experience with this. I hate to call myself "disabled" because I'm determined not to give in to the disease, but I am slowing down quite a bit and it is affecting my income significantly. Can someone give me some advice/tips on this or tell me of their experience with applying for disability. Thanks.

First, check out the following web site....it's a lawyer in Louisiana but the advice is universal when it comes to disability. I don't think my claim would have been approved on the first round if I hadn't found him:

http://www.ssdisability.net/index.html

I found his site about 4-5 months into my claim and the info was still helpful. My best advice for you would be to read everything you could possibly read about Disability claims. Do a dejanews search and see what other's have said and use what you can to apply to your own case. Here is the web address for dejanews:
http://www.deja.com/%5bst_cam=x.urdb.x.050999%5d/

You can do a search for social security disability and look at the letters under alt.support.arthritis and alt.suport.mult-sclerosis. That's the two boards I mostly used since I have both MS and RA.

Stay in touch with the person processing your claim. Make nice-nice with them but make sure you give them all the information they ask for on a timely basis. If you are late, just be sure to let them know it's because of your illness. By the time my claim was approved, it had been thru 3 different claim reps! The last one was really the best one. She would say things to me like, you need a letter from a doctor that states the following......and basically tell me what the doctor should say. That was a pain in getting that. I hated asking the doctors and 2 of my 3 actually said no. The third tried to brush it off but I was in his office when I asked him. I also gave him a form to fill out with yes and no questions to answer to go along with his letter. This is where a lawyer comes in handy. Its a very stressful process and just when I thought it was over they would call and ask for something else. First I saw two of their doctors, an internist and then a psychologist. I thought that would be the end of it and was waiting for an answer when they called saying they needed a letter from one of my doctors.

I would never be afraid to apply but I would suggest that you get a lawyer. I would if I had it to do all over again although it's nice not to give up $4000 to one! (or 25%) I had the advantage of having worked for a lawyer in the past and felt I could handle it. It was extremely stressful especially for the ill person. Its a humbling experience and if you feel you are up to it after you talk to a lawyer then go for it. That's what I did. But .... as I said, I wouldn't do it by myself again.

I collected all my doctors notes for the past 7 years and had them copied and bound in spiral notebooks at Kinkos so it would be difficult for SS to just pick and choose what pages to keep and which ones to throw away. I kept copies for myself. There were 2 volumes! It comprised of 16 doctors and all my labs, x-rays, etc. I wrote a cover letter itemizing what each book had, in what order. In spite of this, they still requested information from my current doctors. Each time I went to a doctor while my claim was being processed, I called my processer to let her know what was dx and then sent copies of the office notes. The key is document, document, document! See your doctor on a regular basis and a specialist if necessary. My friend was turned down due to lack of records. She didn't go to the doctor since they didn't have insurance and she didn't want to spend the money. Since she was a nurse and she refused to take meds she didn't see any reason to go. And this is why her claim has been turned down 3 times. She's waiting for the judge to render his decision.

Also, I kept a list of all my meds with the start date, stop date, reason for stopping such as side effects etc. I included this with my medical records. I also kept a calender of how I felt each day in case it came to going to court, I would have that record.

All SS asks for are records. Your records need to say certain things in a certain way and not all doctors know the right way to say them. For example, you may see on Chuck Ryan's site that they want measurements. The range of motion is so many degrees etc. Only one of my doctors out of 16 actually had that kind of measurement. My orthopedic doctor had that info about my shoulder but until I pointed it out specifically to the claim processer, they hadn't seen it. With my records organized the way they were, I was able to say, "in the orthopaedic section, on page # it says....." My rheumy had the notation that I was totally disabled but they don't count that as much as specifics.

I would suggest that you ask your doctors what they think. I had my doctors ( all 3 of them ) agreement that I should apply. That's almost a given I think to get approved. See what they think and go from there. If they are in agreement with you, then see a lawyer. Usually they work on a contingent fee basis. You only pay them if you win and the initial consultation is usually free. Consider you health when you decide whether or not to go this on your own. The stress was horrible and I'm sure stress doesn't help any of us.

Check out these sites:
http://www.ssdisability.net/arthritis.html
http://www.ssdisability.net/index.html
http://www.ssa.gov/odhome/odhome.htm
http://www.disabilityfacts.com/

I don't know what else to tell you right now. Sorry if I rambled around....
Good luck!
-Arthritis Insight Member Diane

I was diagnosed with RA in 1992 - worked until 1998 and finally after a total right hip replacement (complicated by removal of a synovial cysts that was wrapped around my femoral artery and resultant by-pass surgery and angioplasty - all FOUR operations in one day!!!), I decided it was time to quit for awhile. Fortunately, I had disability benefits from my former employer; but I of course had also to apply for SS disability benefits. My Rheumatologist helped tremendously by quickly getting my medical records mailed to SS and I wrote a detailed explanation of the last few years at work and the pain and absences. I received SS immediately and will not be reviewed by them for 7 years. Good luck to you - if you have all the supporting medical records, it should go smoothly.
-Arthritis Insight Member MLG

Please tell us about your experience with SSDI and any advice you may have for our member.

7/26/00

I am seeing an arthritis doctor for the first time in two weeks. My family doctor thinks I have rheumatoid arthritis. I am scared! What will happen at this appointment?

I had my first RA this week. I am 34 years old and I have been strapped with back and neck pain for many years. The Dr. was very pleasant. He first came in and talked about my medical history for at least 30 minutes, he asked many questions concerning my current symptoms and my history. When this part of the visit was over, I was asked to prepare for an examination by the Dr. After his examination he rendered his diagnosis. He did order blood to be drawn and tested to verify his initial diagnosis. What I heard I didn't want to hear, but I had been in extreme pain at times and had been to my family doctor and orthopedic doctors many times over the last year. It was relieving to finally know what was causing the pain. Although hearing a diagnosis was upsetting, now I can get treatment.-Eddie

There is no need to be scared! The vast majority of rheumatologists don't bite! In fact most of them are really very nice people. My first appointment consisted of a very thorough medical history, a physical exam, some blood work and x-rays. The doctor asked at least a million questions, or so it seemed but the entire appointment was relatively painless, aside from the sitck for the blood draw.

If you are very lucky you will walk out with a diagnosis. But don't count on it. Many people do not get a diagnosis at the initial appointment, it depends on your individual case. Some people don't even have a positive diagnosis after several appointments. The important thing is to make sure you are being treated, regardless of the lack of diagnosis.
-Tina Underwood

What to expect at your first visit with a rheumatologist? I can understand why you are scared...I am sure that when your family Doctor said those infamous word arthritis, all kinds of awful thoughts jumped into your mind. The first thing that you can expect from an arthritis doctor is the same thing you can expect from a first visit to any doctor. They are going to sit down and talk with you about your (and your family's) medical history. They will probably want to know if there is any history of arthritis that you know of in your family. Following this, the rheumatologist will probably do a physical examination. This will involve looking at and checking your joints for signs of swelling or other telltale signs. This examination will involve a lot of poking and prodding so be patient and grit your teeth. If something hurts, tell the rheumatologist about it. The next thing that will probably be done is that samples of blood will be drawn. This can give the rheumatologist some additional information as well as establishing a baseline. They also may, depending on the physical examination want to have some x-rays made of some joints. If the Doctor believes that you have some form of arthritis, you may be started on some medications. A listing of the possible medications is included on the site with a description of each. Because each rheumatologist has a different protocol that they use we will not try to guess which medicines you might be given. In a nutshell that is all there is to it, except for the most painful part, the bill and fighting with the insurance company.
-Ron Griffin

Is it too late to offer my experience about my first RD appointment? I just wanted to mention a few things to the new patient that might help him prepare mentally, because I remember my first visit as being somewhat nerve-wracking. The doctor asked me a LOT of questions, and in return he gave me a LOT of information to absorb. I think, in retrospect, that this was because (as we know) the exact type of arthritis you have may not be easy to diagnose right away, and the doctor has many different things to
consider.

I also remember that at the first visit, the doctor ordered a huge number of lab tests and several X-rays. I mention this because this newbie needs to be prepared for the expense of that first visit. My first bill was over $700. I was in college and didn't even have a credit card that would hold that big a charge. I had to call my mom long-distance and get her to charge it over the phone until I could get reimbursement from my insurance company.

Now, of course, I understand that the X-rays and tests were necessary to a) help rule out other diseases like Lyme disease or hepatitis that might have joint pain as symptoms and b) help pinpoint the type of arthritis you have. You won't have to have so many tests every time you go in, but be prepared for the possibility of a lot the very first time.

My advice to the new patient would be to try to make some notes before the appointment as if he were a journalist reporting his own story. Think of all the whats, wheres and whys and try to write down as much as you can think of about exactly when you first noticed symptoms, exactly which joints were affected first and in what order, how they looked and felt, any other weird symptoms, etc. All of these tidbits help your doctor put together a pattern that will help him or her diagnose you more accurately.

I hope that all this doesn't sound too overwhelming, but it's true that that first visit can be a little scary. Try not to be too scared but to look at it as a positive step you are taking to regain control of your own healthcare. After a few visits, you and your RD will get to know each other well enough to be true partners in fighting your disease and maintaining your quality of life.
-Arthritis Insight Member Robin

I was referred to an RD after a podiatrist took an xray of my feet to rule-out a fracture. I had no knowledge of the field of RD, but I did some research and took in extensive medical history and medication list (from a file stored on my computer.) Actually I do this with all new doctors.

Most doctors have never seen anything like my handout. The reaction is usually "she must be a head case," but my history does not fit any forms I've been given by the doctor. They don't seem disposed to proactive people who are dedicated to being a PARTNER in their health care. Also, office staff seem especially negative to anything not on "their form." This says something about our consumer attitude as patients, doesn't it?

I approached my first RD visit with trepidation, because after my research, I wanted to be in denial. Also, I had to select one via my insurers provider list, and my primary care did not know any RD's in my close geographical area, so she was no help in discerning who to send me too. I asked my pediatrician, and he was able to affirm the reputation of my RD. Lesson: if your primary care doesn't know, use all your medical personnel resources to determine reputation.

The RD basically said he couldn't make any diagnosis without blood work, he prescribed a different NSAID than what I had been on for 7 years. He did not warn me about the "buckets of blood" that were required in the initial tests, later I made him aware of the fright I had at the many tubes of blood. There was also difficulty with my insurer in getting approval on the NSAID. Lesson: when accepting an RX be your own advocate and insist that the doctor find out if the medication needs pre-certification.

I went back because he did not treat me as a "head case", and answered all my questions about treatment options and "best practices" and assured me that I had asked really good questions. I asked things like, "out of the 30 or so NSAIDs we've discussed is there a trial order of use, i.e.always try this NSAID first, and this one second..." and other specific questions with fairly "black or white" answers. Lesson: don't just go with a list, make sure your questions are phrased for the most specific answers.

He shared that in his experience there were really no "best practices" that were relatively predictable for success, and that the field of RA research was far away from predictable, realiable solutions. I asked things like, "out of the 30 or so NSAIDs we've discussed is there a trial order of use, i.e.always try this NSAID first, and this one second..." and other specific questions with fairly "black or white" answers. Lesson: don't just go with a list, make sure your questions are phrased for the most specific answers.

I was discouraged at the lack of a formula for successful treatment. Looking back I think he should have been more proactive in providing me information on where to look further, like the Arthritis Foundation, etc. However, he is always receptive to any articles or print-outs I bring and I am recommending this Web site to him. I did get a second opinion that confirmed what he told me and his treatment plan. Otherwise, I may have switched doctors. -Arthritis Insight Member Mary

What happened at your first rheumatologist appointment? Tell us!