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    Old 09-09-2007, 03:10 PM   #1
    davidzzz
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    Pain...

    Hi everyone... This is my frist post and probly not my last. 49 yr old male here. July 18th I was pre diagnosised with RA by my primary Dr. ( it was in my blood work) and he refered me to a rheumatologist - which I can't get into till October 22. Some of my symptoms are stiff neck, exstrem pain in shoulders, hands and feet and also both wrists. I'm very stiff in the morning and it takes awhile to get moving. I'm having all kinds of trouble getting dressed to go to work each day... pulling pants on, putting socks on tying shoes etc. I'm sure you all can relate. I also noticed I now have a bump- growth on top of my left hand, just above my wrist. Plus some of my fingers are starting to stiffen up. I wasn't like this 6 months ago... Can RA progress this fast ? And the pain... it's unbearable at times. And I have a very high thresshold for pain. My primary Dr. wouldn't give me anything for pain. He said the rheumy would do that. Now to my main question... What can I take other than ibuprofen and aleve - which I've been taking.And I've also been doing the creams. I can't take anything with acetamidophen in it due to liver issues. The nights are the worst. When I go to bed I can expect to wake up within 2 hours in extrem pain in my shoulders and hands. So I get up for awhile till it lessens some and try sleep again. And again the pain within 2hr's. Most days I've been going to work with only 2-4 hours of sleep. Which I know is very bad for me. I know this is just the start of my journey and I'm thinking it's going to be a very long and bumpy road too. I'm so glad I found this board ! Anyway... back to my questions... Does this sound like RA to you all ? Is there anything I can do for the pain until I get in to see my rheumy ? What drugs can I expect he will give me.
    Please respond if only to say hi and I relate.
    Bye for now... Davidzzz

     
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    Old 09-09-2007, 08:53 PM   #2
    WannaBeFreeToRoam
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    Re: Pain...

    Hi,

    I do sympathise with you on your pain. I was first sent to my rheumatologist by my family dr. also. She diagnosed me with osteo arthr. She gave me light meds for pain, and for muscle relaxers, probably others too.

    That was about 3 years ago. Now she diagnosed me with RA and I cannot take most of the RA meds, because I almost always have open sores. So, I just take stronger pain meds, more muscle relaxers, prednisone, and a very light RA med, that even pregnant ladies can have.

    I know it is a long time to wait for a rheumy dr., but your 1st visit is your longest and there are not a lot of RA drs. - at least in my area.

    I would think that your dr/family would give you something mild. The cold weather is the worse time. Of course, you should have some by then...

    Good Luck to you, and more people, who are more informed will surely talk tomorrow.

    Wannabe

     
    Old 09-10-2007, 02:09 AM   #3
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    Re: Pain...

    Hi David,

    Sorry to hear about your pain, and your wait to see the rheumatologist. I have psoriatic arthritis and it affects my neck, elbows, wrists, fingers, knees, ankles and toes. Every day is different, every day something hurts but not all of the joints at the same time. I have been on dmards (leflunomide, methtrexate etc and I am currently on steroids. I am 49 also.

    It certainly sounds awful for you, and hopefully you will get something from your visit, but in the meantime can you get diclofenac? Can you take that? Some people cant, but I have it for pain and it is very good. The Dmards help to alleviate the arthritis getting worse but are not painkillers, you also need something to help the pain. Other people may have other ideas, everyones arthritis affects them in different ways and the drugs affect people in different ways.

    The damp weather makes my arthritis worse, dont get cold, for example I sat in a friends garden on Friday night with others and didnt have the nerve to say can we go in, so I got frozen. Saturday and Sunday have been awful, all my joints are swollen and burning and I ache badly. I should have spoken up and asked everyone to go in, but I didnt want to be a nuisance.

    Do not over do it, I have had to give up work as it was all (after 4 years of struggling) too much for me. I have children and grandchildren and sick mum and sick father in law, so working as well was just wearing me out.

    If you have any other questions, this forum is excellent. Thinking of you. Hope you get sorted in October.

    Ronnie

     
    Old 09-10-2007, 05:56 AM   #4
    davidzzz
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    Re: Pain...

    Thanks for the replies and support. I'm also worried about looseing my job. I work in a large retail store were it requires me to sometimes climb ladders and move product around. Luckly I'm in managment and can have others do this, but there are times I have to help. And it's getting harder to hide. No one at my work knows yet... I want to wait untill my official diagnosis and how much the meds were going to help me.

    Last edited by davidzzz; 09-10-2007 at 06:08 AM. Reason: add more

     
    Old 09-12-2007, 07:27 AM   #5
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    Re: Pain...

    I went through the same thing...took 6 weeks to get an appt with the Rheum. Seemed like an eternity. I took every pain killer known to man. Nothing worked. The Rheum prescribed me prednisone. I was a different person that afternoon.
    Hang in there...

     
    Old 09-15-2007, 10:33 PM   #6
    Gen79
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    Re: Pain...

    Hi David,

    It breaks my heart to read your post. I am a 28 year old female. I have RA, Fibromyalgia and Spondoloarthropathy. I was diagnosed at age 22.

    I too had to wait for ages to get into my rheumatologist's office, but let me tell you, once I was there a weight had been lifted off me (psychologically speaking). I did not think, actually I couldn't foresee, my condition getting better. I wasn't even certain I had RA & Fibro & Spondyloarthropathy. My rheumatologist sent me for a bone scan, which is conpletely different to your average X-Ray. Well now - the proof was in the pudding! I was actually just happy to have someone who could diagnose me immediately after the first appt.

    I am taking Prednisone, Folic Acid, Salazopyrin (sulpher pills at 500mg per pop!) and I was taking Vioxx, then Bextra, which were both taken off the market. My rheumy prescribed Durogesic patches @ 0.25mg to be worn for three days (they're Opiates but NOT mood-altering), then replaced and Methotrexate. They are horrendously expensive but one cannot put a price on one's day-to-day living and health & happiness... even functuality for that case! I used to wake up incredibly stiff, and yes, nights were worse too. Bearing in mind that I have lived with this for six years, my fiance fully supports me financially and emotionally. I HAD to resign from a job I loved last year as I was never sure how bad the days would be. Some were pretty tolerable, others were nightmares (there were no in-betweeners). The latter is what drove me to resign. Additionally, I started developing migraines AT LEAST once a week. I have been hospitalised many times as a result of the migraine attacks. Due to these migraineous attacks I was literally sick, with my head in the toilet bowl (sorry for that graphic picture!) for at least 24 hours if I was lucky. It has been a nightmare of mammoth proportions, but the best thing for you is to hold tight until you see your rheumatologist.

    I know that's not what you want to hear as I felt the exact same way, but it is worth it. Your peripherals seem to be WAY out of control (hands, wrists, knees, ankles etc.). What got me through those weeks before I saw my rheumatologist for the first time was...paracetamol and codeine. Nothing else came close. I am now awaiting a new drug called Lyrica, perhaps ask your rheumatologist about it when you see him/her.

    Another bugger is that I was only 22 years old, and I don't know how long I had RA for before I saw my rheumy. I'm 28 and desperate to make something out of my life, but for the time being it is NOT going to happen. Cold and/or damp weather is a big no-no. I know exactly how you feel. I never wanted to be a party-pooper but your health is so much more important. You will be doing more damage to yourself by staying outside or even out when you're feeling pain. I know this is NOT a solution, but take it from a once-vivacious young lady that you need to rest. Get as much rest as possible. I had the exact same problem as you have, I'd wake up two hours after I went to bed. I fully understand what you're going through, but please have faith in that the more you push yourself, the worse it becomes. At least I was able to finish my university degree, fat lot of good it's helping me! Please, try to take it easy. Also, please let me know what's happening. I'm at home and I'd love to be here for you.

    I'm thinking of you, and you are NOT alone!

    Gen

    Last edited by Gen79; 09-15-2007 at 10:35 PM.

     
    Old 09-16-2007, 01:41 AM   #7
    davidzzz
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    Re: Pain...

    Thanks Jane...

     
    Old 09-16-2007, 02:28 AM   #8
    davidzzz
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    Re: Pain...

    Thanks Gen for your words of encouragement. It really does help to know that others understand and have been here - were I am at now.
    I'm trying my best to get rest, but it's really hard to with the hours I work. - I work 10 hours a day, 5 days a week. And it takes me an hour to get there and an hour to get home. Now add in getting ready and eatting.... Some days are even rougher, when I have to close the store then turn around and open it the next morning. Like last night - got out of there at 10pm, got home at 11pm, in bed by 12. I needed to be up by 6am, but I woke up at 3. And now... here I sit, 5am writing this. But you know what ? It feels good to write about it. As tired as I am, it feels good because, I know there are others out there who have been there, and know what I'm going through.
    I thought about self medicating and ordering some pain med's from one of those flaky online med places, but then thought better of it. You never know what you might get.
    Yes, I'm hang in there... it tough, but I'm doing it.
    36 more days to go till my rheumy appt. ( Oct. 22 )

     
    Old 09-16-2007, 04:56 AM   #9
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    Re: Pain...

    Hi David, I am sorry you're going through all that and know how frustrating it is to have to wait so long to see the rheumy. I don't know much about RA, but I do know it can progress quickly in some people. And if it's more severe, there are stronger prescription meds out there that help keep it under control. If you are looking for an over the counter med to try while waiting to see the rheumy, you've already tried the most common & availble ones (aleve & Ibuprofen). Not sure if aspirin would do anything; other than these, there is one other over the counter anti-inflammatory I know of called Orudis (Ketoprofen). It's usually in green packaging. Howeever, ive noticed at least in my area, it is very hard to find anymore. If you can find it, its another option, though if you have worsening RA, it's doubtful any of these meds would help. Not sure if this will help either, but you might try some moist heating pads over your most painful areas.

     
    Old 09-16-2007, 07:39 PM   #10
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    Re: Pain...

    yes prednisone is an "instant miracle cure". The only problem is it isn't intended for long term use as far as I know. Plus it can add the pounds on if you don't really watch what you eat. I sure wish it were.
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    Old 09-16-2007, 07:50 PM   #11
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    Re: Pain...

    David I am keeping you in my thoughts. My ilnesses went diagnosed for quite some time. I know what it's like to have to wait months for a specialist appt. Please just remember that you are not alone.

    Is there any way someone else can open and/or close the shop for you? Sometimes I'd drive to work at 4a.m. and try to fill as much in as possible, in nine hours. Trying to be alert was a bit of an obstacle when I'd have to sit through meetings, and use my laptop too (my brain is full of porrige and my wrists hurt like hell when I'm tapping away for extended periods).

    So yeah I understand when you say you're working ten hours a day, as I did, then to come home and cook dinner/do the laundry/whatever (!) and run a household is a challenge unto it's own. There are many reasons as to why I left my job. I worked for an investment and IT firm, in the marketing dept., but some days I just couldn't function. Once your rheumy has put you on the right course of treatment suited to both your body and your environment, yu should see a noticable difference. I wish I had a board like this seven or eight years ago, but I learnt through trial and error.

    Please keep me updated. I wish you the very best, and please believe me when I sy there IS hope out there.

    May you have a pleasant start to your week (under the circumstances!).

    Thinking of you,

    Gen

     
    Old 09-16-2007, 08:00 PM   #12
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    Re: Pain...

    Quote:
    Originally Posted by roses4evver View Post
    yes prednisone is an "instant miracle cure". The only problem is it isn't intended for long term use as far as I know. Plus it can add the pounds on if you don't really watch what you eat. I sure wish it were.
    So true!I;m now down to 10mg per day, which is awesome after taking 20mg for many years, then 15mg etc. I also had cortisone injections but to my rheumy's dismay, they only lasted for about three to six days! After two years of cortisone injections at three month intervals, I said "ENOUGH!!!" and he agreed. We live and learn, but the Prednisone thing is a source of concern to me. I don't know how long you've been on it roses4evver but many years have passed. Are you on Pur-Bloka, if I may ask? My last "heavy duty pain medication" was Celebrex. Well that bombed too! The Durogesic opiate patches are a DREAM, and there is a plaster (sort of 5x10cm) called Capsiplast - completely natural. It's Mexican Chilli seed. Those patches were great for moments of extreme pain. Just a thought, look up Capsiplast and you can cut it to your preffered size. Please excuse the spelling erors, it's 05h00 in South Africa and I have not managed any sleep since Saturday.

    You're in my thoughts.

    Love Gen

     
    Old 09-16-2007, 11:09 PM   #13
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    Re: Pain...

    Thanks again you all... for all your support and knowledge. I really appreacheate it.
    I'm googling and writing down all the med's you all are talking about so I can talk to my Dr. about them. The patch seems heavy duty stuff. And shots in my joints ? ... And a pill to make ya FAT ? Nope I don't think so. lol - A little humor. Seriously... I think I would try anything that helps at this point.
    I know about Orudis KT (keteprofen). I used it a long time ago for something, I don't remember what, but as I recall it was pretty good. I also emember that it was hard to find here too. Maybe I'll try it again.

    Bye for now my friends...

     
    Old 09-17-2007, 12:37 PM   #14
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    Re: Pain...

    Gen79

    No, I'm not on pur-bloka (don't know what it is).
    She has me on Enbrel & Arava for the Rheumatoid. Real bad things happened with being on the Enbrel in April this year. It's very highly sun sensitive on a 60 degree cloudy day & I was even using 40 sunblock. I was plant flowers for about 5 hrs. 6 hrs later I had bumps & a bad rash all over the sun exposed parts of my arms & neck & itched to high heaven. Later I was told that that could have been life threatening for me had than been a a little warmer day. So I went off it for the summer & suffered emmencely.

    I have only been on Prednisone 4-5 times and only 4-6 wks at a time in the last 18 mo. My Rheumatologist wouldn't allow me to be on it longer than that & only at high flare times. Don't know if it's because of my age or what. (I'm 46) This is what I meant about watching your weight on it. When I took it, gosh it was WONDERFUL to not be in so much pain, like heaven itself. I would be good the first few weeks then boy did my apetite start increasing & the pounds came on! I'm learning so much from you all.
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    Old 09-18-2007, 04:34 AM   #15
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    Re: Pain...

    Hi all ! Well I got to see my rheumy yesterday. I had asked them to put me on their cancelation list, so if anyone cancels I could get in. It's a last minute kind of thing... they just call you and ask you if you can come in. They called me at work at 9am and asked if I could come in at 3pm. Of course I said yes. ( For all of you all who are waiting for a long time to get into see a rheumy - call them and ask them if you can get on their cancelation list. )

    I feel the exam went very well. I was in there over an hour. He couldn't tell me what kind of arthritis I have yet ( suspects RA ) he needs more tests for that. I asked for something stronger than aleve for pain and he gave me perscscription strenth Ketoprofen 75mg twice a day. He said he didn't want to start me on any of the arthritis med's until my tests came back. He also said he had to be very careful of what he gave me because of my liver issue. So... he sent me to get more blood work done and to get exrays of all my problem areas. I had 45 exrays taken !! They took them of my hands, feet, elbows, sholders, wrists, and knees. I go back next week the 28th to talk about the test results and the course of action we're going to take.

    Bye for now...

     
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