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Newly diagnosed and needing to vent
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singingbear posted:
I finally got a call back from my Rheumy's office yesterday and they confirmed that I do indeed have RA and mild osteoarthritis in my knees. I have such mixed feelings about this diagnosis. On one hand I am so relieved to have and answer and I feel terribly lucky that it only took six months and one visit.

On the other, far heavier, hand I am really having a problem dealing with the news. I am not new to dealing with autoimmune diseases. While this is my first and can only hope my only I had to learn early in life to deal with my father and brother's Crohns disease and my grandfather's ankylosising spodylitis (sp?). I can never forget sitting in the hospital room watching my father die from complications of his Crohns and the medications used to treat it.

I am happy that they seem to have caught it early and I have faith that medications can control most of the symptoms. I also keep thinking of the woman on the RA commercial and I think about how, at 33 now, this will effect me 20 or 30 yrs down the road.

I think that if I hear one more person say "at least you know what it is and you can get on meds. Think positive...." that I will scream. They don't seem to understand that this is something that I will have to deal with for the rest of my life. I feel like they all think I am over reacting by being upset about having RA.

I still have to go back to the Rheumy and figure out an action plan. I could use any support and advise you are willing to give. I am not liking what I read about medication side effects. As of right now I am on Prednisone, which I do not want to take anymore then I absolutely have to. ( I have seen the long term side effects of that one in full force). It has helped a lot with the pain in my lower legs, knees, wrists, fingers, toes, and the swelling but still have some knee pain and the occasional achy neck and shoulders.

Everyday is a new journey.

Thank you
S
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lalobean responded:
I've just been diagnosed as well. However, I've known for well over 40 years that I had some form of arthritis. When I was younger I changed my diet almost completely mostly vegetarian with some meats. The affects of non organic chicken v/s organic are amazing for example - and cutting out white sugars and white flour products yielded amazing results were also amazing. Those changes and weighing much less than I do now, diminished the dis-ease (not disease) to the point where, except for some stiffness, I felt fine for a good 25 years. In fact I felt so fine I slowly added red meats, non organics and fewer and fewer veggies, etc. until I was on a trash diet for a very long time.

I am now making my way back to eating much less. I try to eat mostly organically grown foods, whole grains, no dairy, red meat - is almost entirely out of the diet except for grass fed, free range and organically raised with no steroids or other chemicals. I just added more fish and am keeping close track of what I eat and what is in the food I eat. ... and I'm educating myself as much as possible about RA and osteoarthritis as well as consulting with physicians. I too do not like taking meds of any kind.

Since I started my new regime a few weeks ago, I feel much better and am experiencing less inflammation and pain. Now I just have to get to exercising.

This site is really very good. It is full of information and links to more information about living with RA. Just follow the yellow brick road or Web MD and others and you'll feel more in control of what happens to you. I am working with my doctor who knows me well enough to know I'm going to try the natural way for as long as possible. There is a lot to be said for having faith and believing in my own ability to help myself. I don't see this as a death sentence - I see it more as a wake up call.

Good luck Singingbear. I wish you all the best. I hope what I've shared helps.

Lalo
 
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sfonseca7 responded:
Yes..you are right. No one should attempt to tell you how you feel. I too have RA along with osteoarthritis and osteoporosis. Having these issues is not like having a broken leg that's in cast for all to see. With RA there are no visuals'. Without visuals' people only see the person before them as find and don't understand the problem. The pains of RA are hidden inside. I will not try to tell you how to feel. I will tell how I feel. Some days are very hard to get through. Other days are pretty good. I am learning to take one day at a time. Enjoying the good days and getting through the not so good days. Hope most of your days are good ones.
 
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singingbear replied to sfonseca7's response:
Thank you both for your replies. The last few days have not been the best but also not the worse. While my knee pain has been greatly reduced with the use of prednisone there is still some pain there. The last few days some of the swelling has returned and I feel completely drained of all energy. Feel like my arms and legs are overstuffed sand bags.

I have been trying to use my treadmill some but I am afraid to overdo it. Not sure where the line is between building muscle strength and doing more damage. I always take it low and slow. Not much calorie burn but better then sitting on the couch doing nothing.

Does anyone else also have problems with memory and focus? Feels like some days I can't get from one room to next without forgetting what I was doing. I have spent more time going in circles with my arms in the air just trying to remember why I entered a room. LOL. Feels like I am going crazy some days.

Since I got the diagnosis I have been doing a lot of reading and some previous problems seem to fit into RA symptoms. Of course sometimes I wonder if I am just trying to make them fit because I have no other explanation.

I have so many questions but I am feeling a bit better about the diagnosis. It is not an easy one to take. Again thank you for your replies and you will probably see a lot more of me on here in the future.

S
 
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sfonseca7 replied to singingbear's response:
I too have problems with memmorie and focus. We're not crazy it's part of RA.. This site "RA Warrior" is helpful to me.
 
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lalobean replied to singingbear's response:
I've been having memory and focus issues for several years now but I see quite clearly that it has a lot to do with diet and how active I am. If I don't get out and about early at least two or 3 times a week I'm not as "bright"- LOL by that I mean sharp. Getting out and interacting with others socially, even if it's just to a couple of stores to pick up things helps. For a long while there i was not doing much of anything because it just hurt too much. I guess what they say about using it or losing it goes for brain function as well as the physical. Unlike you however, I am not on medication for RA at this time. If I were and was having memory loss and confusion issues I'd talk to the doc about it right away. I hate that feeling. It's like being under water. Grrrr!

I still do the walking around in circles but I'm laughing about it more... especially when I catch myself trying to put the milk carton on the stove or the coffee pot in the fridge. That sends me straight to memory exercise puzzles on the computer and crosswords. Have you tried those. They really do help. They improve focus and memory function.

Be well Mr. Bear *
L.
 
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Pattimead replied to singingbear's response:
wow I was just diagnosed with RA this week after many months of pain, confusion and lots of worry thinking I must be nuts . I was so relieved I cried as I thought for sure my Dr. was thinking I was crazy. She looked at me and said Patti I am so shocked by this but your testing positive for RA autoimmune disease...I have had so many tests colonoscopy, gastroscopy well you name it . I am 55 years old and in so much pain, foggy brain for sure and I also walk around in circles and totally forget what I went for. I just do not seem to be connecting things in my brain as before and find this very scary. I have buldges on each side of my clavicles and buffalo hump on my back. My hands seem very weak. bur most pain is in my feet and knees and all accross my shoulders...Is this what some of you have been feeling and dealing with. I am just being set up with a Rhumatologist by my Dr. so can any of you explain what I should expect from that first visit. I am also extremely fatigued and every day I tell myself I cannot get up and go to work BUT I do because I must pay my bills and suc. As a newbie I would apreciate Any FEEDBACK FROM ANY OF YOU...... thanks for listening and please let me know what to expect in the next few months.. Thanks Patti
 
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LavShi replied to Pattimead's response:
I was diagnosed with RA in November of 2010....and I have been learning about it since then. Like you, I had much pain in my feet and shoulders....I am now on Methotrexate, Folic Acid and Sulfasalazine. My life is soooooooo much better, I cannot imagine that I lived with pain for so long before I was diagnosed. However, I still have to manage the pain in my feet....I wear Dansko shoes, which seem to help because they have such great support. Life after meeting with your rheumatologist will change for the better!!!! Be an advocate for your health, and keep connecting with others with this diagnosis!!!
 
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Pattimead replied to LavShi's response:
Thanks so much for your reply..I am extremely positive gal and guess I have just been dealing with all this pain thinking wow I am getting old and really hurting. I am looking forward to getting to the Rhumatologist really hope its someone I connect with well. Your post relieved some of my worry and I am real glad I found this site. Thanks so much!
 
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Pattimead replied to singingbear's response:
I was just diagnosed this week and let me tell you... I know that feeling of relief and then fear... I have not got an appt yet with the rhumatologist as my doc wants to get a ct scan of my brain first? I think because of my memory and not connecting things the same as I use too. Very strange feeling... the pain I have been having for over a year now ... It is great to be able to communicate with you all as I feel also my family does not understand what I am going through here. Thanks again cause reading these posts make me feel well, not so alone..
 
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singingbear replied to Pattimead's response:
Patti, as every visit to the Rheumy is still a new experience for me as well I only have limited advise to offer. My first visit consisted of a series of joint test, meaning he squeezed each of my joints and asked me to tell him when it hurt. He also ran a series of blood test to help confirm my diagnosis as well as knee x-rays. Unlike most of you I never saw my primary before my first visit with the rheumy so you may have already had many of these test. On my first visit he simply gave me a rx for Prednisone and sent me home to wait for test results. On my second visit he tested a handful of joints again, confirmed my diagnosis, and gave me a rx for methotrexate and folic acid. I took my first dose of 3 pills last week. I take 4 pills this week and then will be taking 5 pills each week after that. So far I have not experienced any side effects that I know of. I was extremely tired the day after the first dose, however, I also spent that week moving out of my upstairs apartment so don't know which caused the fatigue. The move alone I believe has greatly helped with the knee pain. I will be returning to the rheumy in 6 wks to assess the methotrexate progress and have been told that they will be doing test about every 3 months to test my liver function as methotrexate can effect liver function. YAY!

My greatest advise is to read all you can about RA and the treatment. WebMD is a great resourse. I swear that my rheumy was quoting half of the articles I have read on this site as he explained treatment and possible side effects. LOL. Most importantly don't be afraid to ask questions!!

I completely understand about not wanting to go to work each night. I have managed to make it since last June and only called in once due to extreme all over body pain but that is not to say I haven't wanted to a hundred other times. My pain is primarily in my knees but also have days when my shoulders and neck simply ache. It is not a terrible pain but more annoying then anything as it will not go away.

Hang in there and keep us updated.
S
 
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Pattimead replied to singingbear's response:
Thankyou singingbear, your response does really help me in my quest to understand this diagnosis. You will definately see me hanging aroung as I seem to be learning about this disease non stop..My Hubby thinks that I am reading too much but then again this isn't about him... its about what I am feeling and I plan to make myself very aware.. Bless you and Thanks again.
 
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Happyspirit73 responded:
I was diagnosed 11 years ago with RA. I can fully appreciate your frustration. My family STILL does not understand. I am 38 years old and was told 4 years ago that I have Fibromyalgia. Most people say they understand but, they do ot truly have a clue. The pain, swelling, flares, the meds, side effects... I could go on. Just remember to stay positive and I have found doing self affirmations in the morning has helped. I am sure that this community understands and you are in the right place.

We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
 
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singingbear replied to Happyspirit73's response:
Happyspirit73, I love your quote. It is so fitting for this community.

Pattimead, I am happy to help where I can.

I try to be a positive person although I must admit that some days are easier then others. It is not easy finding a balance between not letting RA control our lives and learning to ask for help when we need it. I have always found it hard to ask for help but I am learning that there are some things that I simply can not do as I use to and that is okay. It does not mean that I am any less of a person.

As I type this I am listening to Martina McBride's "I'm gonna love you through it". I realize the song is about cancer but I find myself praying for a person in my life to give me the same support. RA is so invisible to those around us they don't see our need for support. That is what makes me so happy to have this community to share my thoughts. I know that everyone on here will understand where I am coming from.

Although RA is a part of me that I take to my future I refuse to let it be my future.

I leave you tonight with a couple of my favorite words : HOPE and BELIEVE

S
 
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Pattimead replied to singingbear's response:
I am so happy that I found you all... The positive remarks that I am reading helps me to know I have found the right place..I am going for a CT scan on Monday then hopefully it won't take long to get to a rhumatologist...I am so much more hopeful about alieviating some of this pain in the future.. Sometimes I am not sure wich is worse the pain or the fatigue... Also I feel nauseated quite often has anyone ever felt this feeling before with the RA??


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