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About Me
LynnRivers
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About Me
Artistic, single, young, business woman in the prime of her life cut down by an incurable, chronic, painful and debilitating disease. Slowly getting over feeling sorry for myself and trying to find ways to cope. I refuse to give up or give in. Even though my 'stiff upper lip' is even sore at this point. Still working and have through pretty much all of the pain since the RA really started to hurt in 2006. I wasn't successfully diagnosed until Jan 2007 but was RA factor negative with aggressive symptoms. I run my own business (employees and whole nine yards) and live alone. I didn't get very much support from friends consequently they are no longer friends. I don't blame them, I wasn't much fun to be around. Chronic illness is not only tiresome for the person who has it but tiresome for others around you.
Artistic, single, young, business woman in the prime of her life cut down by an incurable, chronic, painful and debilitating disease. Slowly getting over feeling sorry for myself and trying to find ways to cope. I refuse to give up or give in. Even though my 'stiff upper lip' is even sore at this point. Still working and have through pretty much all of the pain since the RA really started to hurt in 2006. I wasn't successfully diagnosed until Jan 2007 but was RA factor negative with aggressive symptoms.
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Interests
Getting better. That's all I have the energy or time for these days.
Getting better. That's all I have the energy or time for these days.
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Recent Activity
Recently:
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1 discussion post
Wednesday
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LynnRivers wrote a discussion post in the Rheumatoid Arthritis support group: Weird itch/pin prick pain. 6:03pm
Over the last couple of months I have developed a weird sensation that moves around my body. It was so…
October 28
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LynnRivers gave ahhhsushie a 'you're welcome' 9:38pm
Your Welcome! I just had to point out that the doctors have no way of knowing which course the disease…
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Journal
LynnRivers hasn’t written any journal entries yet. -
Hugbook
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Hug
Thank you so much for your reply to someone post! I so wish we could all just take tylenol and feel better! Stage 3 should almost be a diff disease I hate it when people say to me "oh so and so has RA and they're not as bad as you" or "I just changed my diet and now i'm cured" Thats because the disease affects everyone differntly! I also have stage 3 and so far have found nothing that works. Thanks for letting me vent!
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Thank you for the Tai Chi idea! When I was MUCH younger and before RA I used to be very involved in Karate and I imagine that Tai Chi might actually be a little similar to what we called katas which were softer smoother type moves, but from what little I know about Tai Chi, I think it would probably be a bit easier on our bodies!
Hugs to you!
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I really hope you are feeling better these days..
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That was an awesome source of info! I thought my mouth sores were from the methx, and I am meticulous about my mouth because I do have a dry mouth, and have to wear a mouth guard because of the TMJ caused by RA in the jaw. I don't even want to think about the stem cell thing. I have had this disease 10 years, but my cousin has had it 55 years - severe! I wonder how old her chronological age is? Hey wait - you're from BC. That's my home! We've been in Edmonton 10 years, and are just waiting for retirement to move back. I watch BC television, BC news, BC weather, and we take all our holidays there. Lucky you!
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Photos
LynnRivers hasn’t uploaded any photos yet
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Support Groups
Close Rheumatoid Arthritis
Looking for more emotional support from people who have been there and can really understand what I've been through. There are no active local support groups where I live for people close to my age.
Treatments
- Arava Somewhat Helpful
- No Side effects that I can notice but what it does is very subtle and only noticeable after a month or more on or off the medication. I find it helps with the stiffness and tendonitis. However my disease is still progressing.
- Enbrel Too Soon to Tell
- Will be starting Enbrel in Mid July 2009 and discontinuing Sulfazalazine and Hydroychloroqiune. Boy I hope this works.
- Folic Acid Working / Worked
- Absolutely you must take this when on methotrexate. If you don't you hair will definately fall out. Now adays I just take a heavy-duty multi Centrum Forte and that seems to be enough Folic Acid.
- Hydroxychloroquine Somewhat Helpful
- Have been on this med since the beginning and I do notice a difference in the stiffness and level of pain when I go off it. It does help a little bit. About to go off this and onto Enbrel.
- Methotrexate Not Working
- Took between 15 mg to 25 mg orally for a little over 8 months. Blood tests indicated it was helping however the symptoms seemed to be just as bad. Had bad diahrea and migraine headaches on higher dosages and gave up on it when pain had reached previously levels from before the drug.
- Plaquenil Somewhat Helpful
- See generic explanation
- Prednisone Working / Worked
- Took high dose 30 mg when first diagnosed then after 3 weeks tapered down to nothing. Symptoms completely releaved by 15mg or more and started to come back at lower doses. Within 1 month of begin off predinose the symptoms started to become a real problem again. The methotrexate was supposed to kick in by that point but didn't.
- Voltaren Working / Worked
- Best overall response to this NSAID. 75mg SR (time released). My stomach can tolerate it provided I take it with a full meal and gives me more relief than ibuprofen or other NSAIDs I've tried.
- Zostrix Working / Worked
- Bought a topical cream with capsaicin in it and it did give temporary releif when joints on hands and feet go red.
- Azulfidine Somewhat Helpful
- Taking only 1000 mg in combination with other drugs. Have not noticed any difference on or off this medication... but like a good little patient Ive stayed on it at my doctors request.
Close Anemia
Doctor said I have "chronic" anemia possibly due to iron or B deficieny. OR blood loss which is not evident. I'm afraid it might be something more serious due to my treatment for Rhuematoid Arthritis (bone marrow). I'm here to find out more about it.
Treatments
- Dietary Modification Too Soon to Tell
- Eating my brocoli, a little more red meat and reducing my calcium supplements. I feel a little better but no change in the blood work.
- Folic Acid Too Soon to Tell
- Taking folic acid due to other medications I'm on. I have added a B-50 complex as well. Still chronicly anemic.
- Iron Somewhat Helpful
- Made the fatigue lessen but bloodwork still bad.
- Vitamin B6 Too Soon to Tell
- B-50 complex. Still chronicly anemic.
