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newly RA diagnosed, pain and TIRED! Social Security


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Old 09-13-2007, 09:01 PM   #1
batty beader
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newly RA diagnosed, pain and TIRED! Social Security

Hi, I did not know if I should reply or start a new post. Thank you all in advance for any advice! I was diagnosed with severe RA in June. My rhumy started me on Embrel right away, along with Predniosne (sp). The pred. gives me severe insominia and weight gain, so I started weaning myself off of it..was feeling better anyway. This week I have been so tired (which is not unusual for the last 3 months) but WAY more tired than in the past...yesterday my large joints started swelling and today I have been on the couch ALL day with pain. Could it be because I had stoped taking the predniosne? I started it again today. I also have a pretty good headache daily. Is this from the Embrel? Does it get better all? I am not working right now due to the pain. Do most people not work with RA? I have applied for Social Security but have yet to hear anything yet. I know this is a lot of questions, but I don't know anyone who has this. I am so sick and tired of telling my new husband that I am tired and not feeling well. Until 3 months ago, I was extreemly active...never stopping until bed, now I can barely get around until the afternoon. Please help.
Thank you all for your time! Arlene

 
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Old 09-14-2007, 01:24 AM   #2
Ronnied
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Re: newly RA diagnosed, pain and TIRED! Social Security

Hi,

Poor you, you will be feeling tired and achy, arthritis is a very tiring and painful disease. I have had arthritis for 4 years now, and struggled to go to work up and until April this year, when with other health problems I couldnt do it anymore. I am at home now, and the weight off my shoulders is lovely, not having to convince yourself that you can do it every morning is wonderful. The down side is no money. You will have to see what can be done about that. If you rest you will feel better. Your husband will have to try to understand. Just think to yourself if it was him he would be tired and achy. I am on prednisolone after trying all the possible drugs going dmards etc, and didnt want to take steroids every day, but I really have no choice. My joints are great on it, but my head aches a lot, I am putting on weight and the hot flushes drive me mad. Seeing rheumatologist in November, but in meantime see how I go. I am also having hospital treatment for another health problem and may have major surgery soon, so this will mess everything up! I hope you find the drugs that suit your problems very soon and that you start to feel bit better. On good days get things done, on bad rest.

Ronnie

 
Old 09-17-2007, 12:19 AM   #3
miyu
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Re: newly RA diagnosed, pain and TIRED! Social Security

I do this ALOT, as soon as I'm feeling good, I slowly take myself off the meds, then I start feeling tired. then everything is bad again...

so you were feeling good so you stoped the predniosne, now your feeling crappy again. I would say go back or find a med that will work for you and you don't feel bad about taking it.

for me pred was keeping me up all night as well. so I had to take it first thing in the morning, with food, then walk to work, or work out. for some reason working out after taking it with a meal makes it work nicer for me. I also drink lots of water to help flush it out. and I sleep well at night. since much of it is out of my system.

I still gain weight, that is just somethign you really can't advoid, and if you can, I haven't figured out a way yet.

 
Old 09-17-2007, 12:36 AM   #4
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Re: newly RA diagnosed, pain and TIRED! Social Security

If you can at all avoid prednisone, please do. It destroyed my mom's stomach, bones(causing disc fractures) muscle tissue(weakness, falls, etc.) along with all the other ill effects of high blood pressure, buffalo hump, weakness, tiredness and insomnia. None of those effects were related to her polymyagia. She's been in and out of hosptials and nursing homes, still suffering. She got scabies from the nursing home and has been trying to get rid of them for months....they go then come back......prednisone supressed the immune system which usually can help kill them off....this becomes very important when the scabies become immune to the prescribed pesticides!

So after only 8 years of prednisone, even at eventual low doses, she's pretty much wheelchair bound...well, she can get up with a walker for the short walk to her bathroom, although she did fall(legs gave out suddenly) again awhile back. My dad takes care of her but he's old too. I know some of her stuff is age but then again, 8 years ago she had normal bone density, was pretty strong and rarely got sick or had infections at all ( but now, oh yeah, the constant yeast and urinary symptoms and infections due to poor immune system caused by prednisone have been fun for her too).

Alternatives for inflammatory symptoms include fish oil (which is a natural anti-inflammatory and blood thinner) and dietary changes like less meat, dairy and margarines/omega 6 oils, and more fruits, veggies and antioxidant foods like dark choc and green tea.

The fish oil is very important along with some dietary fish and nuts like walnuts for more Omega 3's.

My humble advice: avoid prednisone unless it means life or death.

Last edited by Jennita; 09-17-2007 at 12:38 AM.

 
Old 09-18-2007, 07:23 PM   #5
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Re: newly RA diagnosed, pain and TIRED! Social Security

Quote:
Alternatives for inflammatory symptoms include fish oil (which is a natural anti-inflammatory and blood thinner) and dietary changes like less meat, dairy and margarines/omega 6 oils, and more fruits, veggies and antioxidant foods like dark choc and green tea.

The fish oil is very important along with some dietary fish and nuts like walnuts for more Omega 3's.

My humble advice: avoid prednisone unless it means life or death.
yeah everyone has been saying that to me, the exact same diet. a firl a work mentioned all of the above, I might as well try it, when my doctor told me how strong one pred is. and compared it to takeing my avair (staroid for asthma) for 20 years everyday would = one pred. I couldn't believe it. but you never really hear to much about side effects. I took my last pred last night, was up all night, and now I'm up all day. its now 8 and I should try and get some sleep.

 
Old 09-19-2007, 07:06 AM   #6
batty beader
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newly RA diagnosed & Social Security

That darn Pred. They say to rest when feeling crapy, but it keeps us up all night! I am down to 10mg a day and will ask the doc on Friday about something else. Has anyone ever tired bee sting therapy?
Thank you for your posts. It is good to get some information from others who suffer from this.
Can someone tell me about the Social Security process?

 
Old 09-19-2007, 01:50 PM   #7
Jennita
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Re: newly RA diagnosed, pain and TIRED! Social Security

I've never heard of bee sting therapy. But Royal Jelly is supposed to be very helpful and is full of amino acids. Now, I'd forgotten about that stuff, you've reminded me to get some! I don't have any health conditions but I like the idea of prevention with health foods so I routinely take some food based supplements so Royal Jelly would be a good addition.

 
Old 09-20-2007, 07:08 AM   #8
wen10
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Re: newly RA diagnosed, pain and TIRED! Social Security

hello every one this is my first post. i too was recently diagnosed with rheumatoid arthritis and have been prescribed prednisolone which certainly helps as the pain is unexplainable if left unmanaged!However i am rather concerned at previous posts with regards to the dangers involved in taking these drugs, have you any ideas for alternatives?Due to trying for a baby the choices are quite limiting with DMARDS being a last resort. Heat packs are very helpful to ease pain, try to not fight the flare-up but reswt until it passes. You could apply for DLA, its a long form but worth it as every little helps.
wen

 
Old 09-20-2007, 10:42 AM   #9
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Re: newly RA diagnosed, pain and TIRED! Social Security

I've had RA for 40 years (since I was a kid). To stop the disease from progressing you really need to be on a disease modifying drug such as Enbrel or Remicaid. I was on Gold (Solgonal) for most of my life, and that stopped the RA from destroying and deforming my joints, gave me energy and alleviated the pain at least 85% of the time. It didn't get rid of all of it, so I had hammertoe surgery, wrist fusion and corrective jaw surgery, just to name a few of the surgeries, to correct the damage that the disease did cause despite medication. And, when I was a kid I was constantly getting my knees drained. But hey, at least I've been able to live a pretty normal life, and didn't end up in a wheel chair. Scherring Plough stopped manufacturing the Gold when they decided it wasn't making enough money for them. I was in pretty bad shape until they came out with the Enbrel, which is just about as effective for me as the Gold was. I inject myself twice a week, and (to my knowledge) have no side effects. Don't let anyone fool you into thinking that simply eating right and taking supplements such as fish oil will take care of this disease. Your white blood cells are attacking your body, and it's taken years of research to come up with drugs that will stop them from doing this. Believe me, I've tried everything else. Good luck and God Bless!

 
Old 09-21-2007, 12:58 AM   #10
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Re: newly RA diagnosed, pain and TIRED! Social Security

University of Newcastle did a study of RA patients and the group that used fish oil showed no difference in an 4-8 week period; at 15 wks., however, they found dramatic improvement! No improvements noted in the control group.

Dr. Joel Kremer of the Albany Medical College has summarized the current knowledge concerning fish oils and rheumatoid arthritis and concludes that taking 3-6 grams daily of fish oils (n-3 dietary fatty acids) for 12 weeks or more will significantly diminish joint pain and morning stiffness in RA patients. Several studies have shown that the improvement in some patients is significant enough to allow them to materially reduce or completely discontinue their use of non-steroidal anti-inflammatory drugs (NSAIDs)

Three months into a study in Belgium showed fish oil group improvement, and even more apparent at 12 months.

A British study highlighted by ***** article showed fish oil combats Crohn's disease, testing the effect on white blood cell inflammatory process. After 24 weeks, blood test showed a marked change in those cells.

Fish oil definately has an effect on inflammation, but it takes several weeks to months to start causing positive changes. It's no guarentee, but then again, neither are drugs since they can stop working or not completely stop the disease process.

I think natural things should be considered as options, especially when drugs bring too many complications.

 
Old 09-24-2007, 10:53 PM   #11
WannaBeFreeToRoam
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Re: newly RA diagnosed, pain and TIRED! Social Security

Just a short note to all on this thread,

I also have rheumatoid arthritis. I do take prednisone. If you want to get off of this drug, you should only do so with the help of your Rheumy dr. It must be done very slowly.

Also, a pregnant woman can only take a few of the rheumatoid drugs. I am taking one of them (not pregnant, but have open sores). It is very mild and is called Sulfasalazine. I take 3 pills, 2 x day. Amount will vary per person.

Hope yall find what suits your particular illness and body. I am working on a new pain med., but until then, I will take my 4 - 5 drugs, including prednisone.

Take care.

Wannabe

 
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