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#1 barefut

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Posted 19 January 2007 - 08:30 PM

Today has been the worst I've experienced yet for muscle and joint pain and especially the stiffness and loss of range of motion.

My joint pain has been everywhere all at once: hips, shoulders, wrists, elbows, and fingers. And my tendon rubs are acting up too. And my feet are killing me. It's a conspiracy.

I feel like someone went in and cut my 'rubberbands' took out 1/2 the length and tied them back together. I can barely move. It frustrates me to tears. I can't take care of my kids. My kids are taking care of me and there is nothing I hate more than that.

It's MY job to take care of them. I am Mom. If this is a taste of what is yet to come, I'm not going to be adjusting too well.

A couple of questions for y'all:

1. Do your symptoms worsen with menstrual periods?

2. Do you feel worse after being under flourescent lights? If so, do you know why this is?

3. Is 800mg ibuprofen and 1000mg acetaminophen taken at the same time every 3-4 hours too much?

4. What do you suggest I ask rheumatologist for in the way of new pain relief?

5. I'm taking my kids to Disneyland summer '08. Anybody know if the park provides scooters (like the grocery stores have) to rent or use inside the park?

Thank you any replies,
B

#2 Lori-Scleroderma Spouse

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Posted 20 January 2007 - 03:07 AM

Hi

The only question I can answer for you is the last one. Yes they rent the scooters inside the theme park. You also can use the handicapped parking (as long as you have a sticker, which I assume you do) that is a great deal closer. THere are also special lines at all the attractions that will eliminate you standing in long lines. You can drive the scooter all the way up to the line. I hope you guys have a great time. I also responded to you on the post about cellcept. Good luck.
Lori
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#3 nan

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Posted 20 January 2007 - 04:58 AM

Bless You! I just read this after I saw your response to my x-ray dilemma. I am so sorry you are going through so much pain!!! I don't know about the combination of medications. I would check with your doctor or a pharmacist. You definitely need your rheumatologist to give you something better for pain. I got sick in 1998 with Sjogren's , Fibromyalgia, Raynaud's, and GERD. My son was 5 turning 6. I hated the fact that he saw me so sick. At that point I was pretty fortunate because I would have flares and I wasn't consistently messed up. Ever since my major GI bleed in 2004 I have pretty much been messed up all of the time. Some days much worse than others. I don't have my periods( hysterectomy in 2000) but I believe if I was having them that it would increase the problems of scleroderma. How many little angels do you have?
You are in my thoughts. I send a big hug your way!
Nan

#4 laurie906

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Posted 20 January 2007 - 06:23 AM

Hi

I am so sorry for your pain. It sounds like a severe Raynaud's episode that I had. I have a topical application I use for pain - really helps with that rubberband description you gave. I feel that from my wrist up my arm to armpit. From my collarbone to my chin, and from my upper thigh to behind my knee. It's just like you described. Someone, something tighten a rubberband and if I stretch too much( or sometimes even move) I feel it will pop! I also had a "pain all over, burning, pins and needles" reaction to my migrane medicine. I was on Imitrex. Turns out this was a severe Raynaud's reaction. I hadn't felt that much pain EVER. I was everywhere my sclero affected my skin. I used the topical application to calm it down. Saw my neurologist who changed my migrane med to Amitriptyline. Turns out Imitrex has a warning to not take it if you have Raynaud's. when I started taking it 8 years ago, I didn't have Raynaud's and when I did, I just thought I was cold. Imitrex works by targeting the nerves and blood vessels that cause the pain of migrane. Works great for the migrane but triggers the Raynaud's episodes. I would have your doctor review all meds you are taking (including over the counter) and see if there are any that trigger the pain reaction you are having. Send me a private message if you want to exchange names of topical pain relievers.
Laurie906

#5 janet905

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Posted 20 January 2007 - 04:25 PM

hi barefut,
sorry that you're having so much pain. I know the feeling sometimes. esp in cold weather. the dosage of acetaminophen that you are taking is fine if you want to go into liver failure. you are taking more than the max daily dosage of a drug that has a very narrow range of safety. in other words, even the maximum daily dosage can be toxic to some individuals. this is a very dangerous otc drug esp if taken daily at high doses. please tell your doctor about this. a lot of people end up on a transplant list each year from taking too much of a drug they see as fairly safe because it is otc. also the high dosage of ibuprofen that you are taking can cause kidney damage and GI bleeding . you are exceeding the recommended dosage on this one too. I know the pain can make you nuts, but don't do permanent harm to yourself. personally, I take celebrex for pain. it really helps me alot. I try to only take it when I really need it. my rheumatologist told me not to take any tylenol due to a delicate liver ( had liver meltdown while on methotrexate) which was a shock to her since my liver was always so "healthy" and I am in my early forties. I think this disease really stresses our organs even when we feel normal. it's like we are always on the edge and a little stress (medications included as stressors) may tip the scale. again, discuss this with you doctor. good luck
janet

#6 emmie

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Posted 20 January 2007 - 08:30 PM

Hey Barefut,

Do you have lupus tendencies? I ask because of your question about reacting to flourescent lights....how does sunlight affect you? Some people with lupus who are photo sensitive are also sensitive to flourescent lights.

And yes, I always feel worse for the 2 weeks before my period, mentally AND physically. (at 52 you would think I'd be done with this, but I am more regular than I ever was when I was young!)

So very sorry for your pain and discomfort. And with the xrays...I had just hands done last month; ouch. They have you do such contortions and with arthritic hands it is like torture. They should at least give us nice bath salts or something--I mean, kids get stickers, right? :P

take care and get something less liver destructive for your pain.

xoxo emmie

#7 barefut

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Posted 20 January 2007 - 09:16 PM

Thanks Janet,

I have had to take 800mg ibuprofen and the 1000mg Tylenol together at the same time mid morning, on some days when I'm nearly immobile and still, it barely takes the edge off.

I have never continued those two together at that dosage every 3 - 4 hours all day. I'm just saying that is what it WOULD take to make a dent in my pain.

Some days I will go through 1600mg/day ibuprofen though. I have always worried about my kidneys but aparently they are fine. (?)

Today I took my ibuprofen/Tylenol cocktail which didn't touch the pain so I took 2 naproxen, still no good, so I took another I/T cocktail. Also drained the hot water tank twice with two long hot showers.

Yes. I think it's FINALLY time I get a doctor to listen to me! I asked my rheumatologist 3 months ago for something else and she blew off the question which surprised me. I need to be more assertive. :( ????>>>>>>>>>>>>>> :angry: !!!!!!!!!!!!!!!

#8 barefut

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Posted 20 January 2007 - 09:28 PM

Lori, Nan and Laurie,

Thanks for your replies. Lori, Good to know about the theme park scooters, thanks :)

Laurie,

Yea, I used a topical today too as well as heat patches on my shoulder and elbow. They created a distraction from the pain without a lot of pain relief.
I tried amitryp. at one time for about 2 months. I could not function from the drowsiness. Good to know about the Imitrex.

Nan,

Thanks for cyber hug. I have 2 precious boys 9 and 4 1/2. :wub:

#9 bookworm

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Posted 20 January 2007 - 09:33 PM

Hello, Barfut,

I am sorry you’re in so much pain and I agree with Janet that you need some different drugs. I try never to take acetaminophen because I worry about liver damage, although my liver is in good shape. I am very surprised your doctor hasn’t said anything to you about that.

I see that you are on a drug for acid reflux so, again, I am surprised that your doctor hasn’t cautioned you about stomach problems from that! I thought that anyone with GERD was warned not to take any of the NSAIDS (non steroidal anti inflammatory drugs), which includes aspirin and ibuprofin.

I take Celebrex, which is easier on the stomach. I don’t take it “as needed,” but on a regular basis. My rheumatologist told me that I could take it as needed but that if I was needing it more than three times a week, it would be better to take it every day.

I also am taking Prednisone in varying amounts and I frequently seem to have to up the dose of that because of a painful flare-up of aching in the joints. This is done with my doctor’s approval.

Lately, it’s been more than the joints. I intend to ask the doctor if she has any idea what’s going on. I don’t know if the is rheumatoid arthritis or something else. It seems to be more than joints that are hurting! I also have the stiffness and the loss of range of motion. My feet hurt too! Also my knees. A couple of nights ago, it got so bad I didn’t think I was going to make it to my bed. I had been pretty good all day, though. This just kind of came on at night and it did it for about three days in a row. For some reason, once I get into bed, with my heating pad at my feet and two hot corn bags to snuggle with(!) I feel better and can go to sleep. The next morning, although I am slow to get going and am always stiff, I do feel better and can function well through the day. Then I get really bad around 8 or 9 p.m.

You understand this is right now
and next week may be a whole new thing! Whatever this is (and I’m sure it’s related to CREST), the Prednisone helps a lot!

I see that you are on Cellcept. I seem to recall that some people are on that and others are on Prednisone. Do they do the same job or what? I don’t think the Cellcept is a steroid, which would be nice, but does it have a lot of side effects for some people? Actually, Prednisone seems to have a lot of side effects for some folks, but I’ve never had a problem with it. I am usually on a fairly low dose, though. Even when we upped it during my last really bad flare, I only went up to 20 mg. Right now, I am on 6 mg.

I would definitely talk to your doctor about pain management. If he/she is no help, request a consultation with a pain management clinic. I got a lot of help from a pain management doctor when I was suffering with a finger ulcer.

Since stress can trigger autoimmune diseases to flare, I’d guess your monthly period could do so, but I don’t know.

I’m sorry this is so long. I always seem unable to write short posts!



Mary in Texas



#10 Heidi

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Posted 21 January 2007 - 04:17 AM

Hi Barefut,

I second the opinions about Celebrex! It is so much better then trying to touch the pain with Tylenol or Ibuprofen. I had to stop taking it for 5 days before I got an endoscopy done and wow! I had no idea how well it was working until I had to stop it.

I do hope you can get some relief.

Warm wishes,
Heidi

#11 barefut

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Posted 21 January 2007 - 06:08 AM

Emmie,

I don't know about lupus tendancies. I don't have any problems with sun but it seems everytime I leave department stores or grocery stores after spending an hour or more in there, I feel achy and drained. Could just be the walking. (Could just be my kids! :lol: just kidding. With or without kids I feel the same)

As far as my period goes, I am starting to see a pattern. The bad day that prompted this post was the first day of my period.


I agree, we SHOULD get SOMETHING for being good at the doctor's too :rolleyes:

Mary,

Cellcept is an immunosuppressant it does very little to nothing for my pain. I guess I'd be willing to try pred but I have a tendancy towards EASY weight gain and I can't afford to put on any more. That would probably cancel out the benefits - lugging around more poundage :(

I didn't know you could take Celebrex as needed. I thought you had to take it everyday. I hear its very expensive and I don't suppose there's a generic.

Side note - I read a disturbing article about drug companies paying off generic drug makers to delay the realese of their generic versions. It's a win-win-lose proposition. Both drug manufacturers win and WE lose. This is aparently legal?!

Anyway, I know what you mean about next week being a whole new ballgame. My pain waxes and wanes throughout the day but some days is a constant. And it seems constant whenever "Aunt Flow" visits. :angry: Maybe I need to do something about her? :lol:

Thanks for your replies gals,
B

#12 janet905

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Posted 21 January 2007 - 09:03 AM

hi barefut,
I definitely notice a huge difference in pain (more) around that time of the month. I also get more moody (depressed). it's not my imagination either. it's consistent. my gynocologist put me on one of those bc pills that shorten the monthly period to a few days if any and they seem to help tremendously. he's a great doctor and believes in relieving symptoms. you have to find a doctor that cares about you and listens to you. as far as tylenol goes, you are at risk of liver damage even if you are only taking this drug . it doesn't have to be a combo of otc drugs in high doses. and you won't get much warning if you go into acute liver failure. you can feel good one day and within a few days be in a coma. as far as kidney damage, you have to lose 75 % of nephron function for signs of kidney damage to show up. it's not a pain thing with renal damage. just be careful ! I really do understand the desperation pain can cause. we had a cold snap last week and it caused my hands to hurt so badly I just cried at one point . (something I don't often do) . I am pretty pain tolerant. I am taking viagra for a finger tip ulcer that won't heal (started with cool weather few months ago) and it's still there. that and my joints ( hands and everywhere else) just ache. am taking more celebrex now! you have to find a safer alternative that really helps your pain. again good luck
janet

#13 barefut

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Posted 30 January 2007 - 06:37 PM

A bit of hope.......?

Saw my rheumatologist and pulm doctor today.

Rheumy wants to try me on low dose pred instead of Celebrex. I am cautiously optimistic. Like I said, I sure don't need to be putting on any more poundage. BUT hopefully it will allow me some pain free mobility and I can start exercising again. I'm keeping my fingers crossed.

I also got a referral to a hand therapist so I can get some good advice on hand exercises and find out just how bad off - or well off I am. There's a lot of things I just can't make my hands do anymore but so far the skin on the backs of my hands has stayed pretty loose. I have no curling but a lot of finger thickening.

Pulm doctor baffles me sometimes. Last visit he mentioned that there were no changes in the CT scans (taken 2 1/2 months apart, the second one taken so soon due to an infection scare)

Then THIS visit he said that "Even with the changes in the CT's...." my PFT changes have had only minor fluctuations and therefore he says my lungs are
stable.

On different visits he has used the words "mild scarring" and "moderate scarring" to describe my lungs. I guess I can take this to mean that they are "mildly to moderately scarred" (?)

I have a digital vioce recorder and I swear, I'm going to use it next time I visit him.

The last thing he said was, your're fat lady. Just kidding! :lol: But not really. He actually said that my lungs are giving me no excuse not to exercise and he understands that with sclero I have other "issues" (or EXCUSES! :lol: ) keeping me from getting moving but that I need to look at it as a health issue.

Well, I always HAVE looked at weight loss as a health issue! :angry: I see him again in 6 months. I need to lose 75 pounds. I'd love to go back the first of August at least 60 pounds lighter! We'll see what pred can do for me.......

Take care everyone,
Barefut

#14 Heidi

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Posted 31 January 2007 - 03:17 AM

Hi Barefut,

Thanks for the update. I certainly hope the prednisone works for you and doesn't cause you weight gain. When I took it, I totally lost my appetite and it caused me to have ALOT of nervous energy! So, hopefully you might experience the same...loss of appetite and energy!

I am glad you got a referral to a hand specialist. I hope that you find that helpful. And, yes, isn't it frustrating when your doctor says different things on different visits. I am continually saying things to my rheumatologist like, "But last time you told me.....".

Anyway, overall, it sounds like you had fairly good results. Please do keep us posted on how you are doing!

Warm wishes,
Heidi

#15 sadie20

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Posted 06 February 2007 - 03:23 PM

Barefut,
Good luck with your pain management. I truely understand as I have been off all meds for 3 weeks as my liver enzymes were really high and the liver doctor told me "I really don't think you have Auto Immune Hepatitis, I think it is the drugs you are taking so I want you to come off all meds for 3 weeks and we will recheck." For 3 weeks I am taking many hot showers and using various pain rubs - pretty miserable but I really have no choice She was right, they came down so my rheumatologist is starting back each med at 2 week intervals and we are rechecking my enzymes. I'm now back on the Cellcept(which as you said does NOTHING for pain) and I believe this is the drug causing the problem, but I will see in 6 days(labs). I really hope to be able to take Celebrex again because it helps so much. I am just baffled that doctors seem so reluctant to give stronger pain meds to sclero pts. If my pain continues or I am unable to take celebrex again, I plan to go to a pain clinic. I am also perlexed about the various Sclero treatments as my doctor insists Cellcept is THE miracle drug(she did intern with 2 of the wellknown Sclero doctors for 3 years so I guess she knows her stuff), but when the liver doctor told me if I had AIH I would need to go on Pred forever, my rheumatologist told me it was not an option as Pred is not recommended with sclero. So who knows?? This disease is so confusing from one minute to the next. Keep us updated as to the effect of your Prednisone. I just happened to remember that when I first became ill, my right arm was swollen, red and really painful. We thought it was infection from a spider bite, but after 4 different AB my PC ordered Prednisone(I had not been diagnosed yet and thought I was crazy) and it was like a miracle. Within 2 days, the inflammation, pain and swelling subsided greatly.

#16 smac0719

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Posted 07 February 2007 - 02:51 PM

I'm sorry to hear you're having a rough day. I wish I had more to offer, but the only thing I can answer is #8. I've never been to Disneyland but I know DisneyWorld in Orlando has the scooters. That was the only way I was able to take my kids on a trip last year.
I may have Scleroderma, but Scleroderma doesn't have me!