[ronda]

Hi, Ronda here.
I was just wondering if anyone out there is dealing with this.????
I have Severe Rheumatiod Arthritis. I was officially diagnosed about 1 1/2 years ago. When I was diagnosed by my Arthritis Specialist, it was only after 8 years of trying to get my "Previous" family Dr. to listen to me. His opinion of what was wrong with me was "your to fat and you just have tendonitis".
Yes, I am a fairly big girl, but for 8 years he ignored me. So I called my insurance company and told them I was getting a second opinion. Yippee for me, I finally was told that I wasn't crazy, I have Severe R.A. and Osteo Arthritis. My R.A. was way out of control.
I am under treatment now, and on several medications and one Infusion treatment. I have learned that this seems to be a roller coaster ride of sorts. :weeping: combine all the with Chronic Fatigue Syndrome. Somtimes it is a bit more than I can deal with, but I am learning and trying.

So does anyone out there deal with this???
How are you handling it???
What is your biggest obstacle???
What meds are working for you???
Where are you, as far as joint damage, mobility, etc..???

Just wondering??? I do not know ANYONE with "Severe" R.A. much less anyone R.A. at all. It feels kinda isolating. Most people in my life just look at me like "there's nothing wrong with you that I can see". Even though my hands are begining to disfigure, walking is difficult at times, and I am nearly always in pain.

Any and all responses are welcome and needed. I would like to learn from others, more about this disease. My doctor really has not been very informative beyond the point of medications and treatments. And if that does not change, I will seek out another doctor.!


Love & Prayers,
Ronda

 

[heartofmine]

I have Rheumatoid Arthritis to but mine is not severe yet. I am living untreated because I don't have insurance. Rheumatoid Arthritis runs in my family. My mom has it as well as osteoarthritis. I have an uncle that has it and its crippling him. Another uncle had it but he committed suicide about a year ago.

I know what you mean about the doctor's saying the only thing thats wrong with me is my weight. I was having female problems and was sent to a few gyno's and each one just looked at me and said the only thing wrong with you is you need to loose weight. Well guess what? It wasn't my weight. I had cancer.

 

[FrugalGypsy]

Hi Ronda,

So does anyone out there deal with this??? I have RA. I was diagnosed at 18 but suffered from the time I was 10. Im 39 now.

How are you handling it??? Most days I do ok. I get depressed, especially when I cant do something with my family.
Honestly, I wake up everyday in pain and sometimes I need help getting out of the bed. Several years ago I got an adjustable bed that vibrates, it helps. (there are some that have heat also.)

What is your biggest obstacle??? Walking, it is just wretched pain every step. I force myself to walk though. It is mind numbing slow walking but it is walking. I always use a cane or walker. If I want to go to more than one store, I have to use a wheel chair.

What meds are working for you??? Currently I take 30mg of flexeril daily, 1500mg of Naproxyn daily, and I take Vicodin as needed but can take three a day. I need it maybe four times a week. I dont do any of the IV therapies. (Im a stroke survivor and often the IV therapies dont mix with my other health problems.)

Where are you, as far as joint damage, mobility, etc..??? Like I mentioned above mobility sucks. Other than walking, I cannot bend over hardly at all (need help with dressing below the waist, socks, and shoes.) My hips joints are badly deformed from the RA. My back, shoulders, hands, neck, and feet are also deformed but not as much as my hips.

Things I have found that help.

A hot morning bath can ease the pain enough that I can get some breakfast and take medications.


Sleep...I sleep when I get tired. If I put off sleep, I pay for days in pain that makes me weep all day.

If you can move it, use it.

Pools...If you can get into a pool...go! The pressure the water takes off your joints is amazing. The first time I got into a theraputic heated pool I literally stood there and cried. To me it is better than chocolate.


I dont vacuum, sweep, or mop anymore. The back and forth/push&pull movement along with the bending just sends my pain level up way to far. (Luckily I have a DH and kids that are willing to do those things.)

I shop in the wee hours of the morning when the store isnt crowded and I can use one of those buzzy carts should I need one. (The dirty looks I get from some senior citizens gets under my skin a little but I refuse to keep walking when I am crying from pain.)

The heating pad is my good friend, in fact I have several around the house.

I have a small office chair on wheels that I use in the kitchen while I cook. I cannot stand for more than maybe twenty minutes tops. So I sit since I love to cook and many kitchen tasks take more than twenty minutes. (I make dozens of treats during the holidays using my little chair also.) :relieved:

Higher profile vehicles are much easier for me to get in and out of. (like a minivan)

Hope you find the treatment that works for you.:vibes:

 

[frugalfriend]

My dh has RA, so I see its effects firsthand. He was diagnosed in his early 20's and he is 44 now. He is on methotrexate and tolectin (tolmetin). He does pretty well, but he is often really sore and stiff if he misses his meds or cuts back, and if he overdoes it with physical activity. He seems to think diet has a lot to do with it too. I am glad he is off prednisone, which he took for years.

I do wonder if someday I will need to support the family . . .

 

[ronda]

Hi, Ronda here. Sorry it has taken me so long to respond. Hubby and I had been on vacation, and only returned a few days ago.


How am I handling it? - It's getting harder and harder to be perfectly honest. I do find myself giving in to sleep a bit more. I try really hard to stay active and mobile, yet from day to day I never know how I will feel till I wake up in the mornings. I try to keep pushing forward. I am not a quitter, yet my Dr. has told me at my last visit, "slow down, stop pushing my self so hard, learn to say NO, and go ahead ands start the process of filing for disability. (Not sure how I feel about that one??) Mornings are absolutely the worst time of the day for me, or when it's cold, raining, or damp outside, or when my chronic fatigue is on overdrive.

Biggest obstacle for me? - More and more often the pain in my hips, ankles, neck and hands. I have a more increasingly difficult time standing for long periods, opening anything that is closed to tightly, or getting onto my feet when getting out of bed in the am.

My meds are as follows-
Although my dr. says more changes are to come. My infusion is not working, as it should.
For type 2 Diabetes-
Metformin- 500 mg -1 x daily
Aspirin – 81 mg 1 x daily


For Rheumatoid Arthritis & Osteo Arthritis-
Orencia Infusions 1 x monthly (just increased to 750,not sure of unit measurement?)
Daypro 600 mg-1 @ 2 x daily (generic)
Methotrexate 2.5 mg - 7 @ 1 time 1 day a week
Plaquenil 200 mg - 1 @ 2 x daily (generic)
Folic Acid1 x daily
Tylenol Arthritis 650 mg - 2 @ 2 x daily

For High Blood Pressure/R.A./Protection from Diabetes damage to my kidneys-
Lisinopril/HCT 20-25


Vitamins taken daily -
C - 500 mg 1 daily
Omega 3 fish oil - 1200 mg (EPA-216mg, DHA-144 mg)
Evening Primrose oil - 500 mg 2 @ 1 x daily
Flinstones multi vitamin - 1 @ 1x daily

To be perfectly honest it scares me to think that I am headed for such severe pain and damage that my dr is already mentioning "wheel chairs" and such. I am an optimistic person for the most part, yet admittedly I find myself looking at someone in a wheel chair, wondering if they might have sever RA.
I recently met a gentleman when I went for one of my infusion treatments. He was very bold and asked me how I was, where I was at, what was and was not working for me. Then he told me that he had only been diagnosed 3 years ago and now he was for the most part wheel chair bound, he sleeps in a recliner, and is on massive doses of pain meds, aswell as all of the infusion treatments he and his insurance can provide. I asked him why was he asking me all those questions? He replied, get a good look at your future, wake up and do everything you can to take care of yourself. Meet everything head on with a strong determined mindset of positivity and not negativity. Do not ever give in, or give up.
I was shocked and amazed at his strength of character, will and boldness. Yet knowing that he had only had this for a very short time was also a bit discouraging aswell to be perfectly honest.


I am also cutting way back or cutting out certain types of housework or having my family help me with them. Thats really hard for me, yet I am learning there are things I just cant do, or am not able to do at certain times, so I must have help.

We are now also going through financial hard times because I am no longer able to work, thus my intense life challange to become more frugal, tightwad like, and finds ways to cut back on anything.


I did find this past week while on vacation (staying with my lil sis in florida) she has a pool. Not it's not heated, yet it is in florida, and the pool water was so very warm that it felt wonderful. I know what you mean about the weightlessness of it. all my joints felt better for a time.


Anyway thanks for everyone's help. If anyone has any thing else to share, PLEASE doso.

Love & Prayers,
Ronda
Have A Peachy Keen Day.