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SadSickTired
Regular Member


Date Joined May 2009
Total Posts : 99
   Posted 5/25/2009 2:13 AM (GMT -7)   
shocked     Okay guys I am in a jam and need all and any advice!  I am still in dx limbo and it is causing me all sorts of trouble!  First of all I am in such pain!  It started just in my knees and ankles.  That was bad enough but ibuprofen did the trick- for awhile.  Now it is getting worse and I feel like crying.  Its my whole body- it aches like crazy.  Any ideas on what to do?  The ibuprofen / tylenol mix isn't even working.  Even my old standby of Pamprin (hey its made to relax muscles!). 
    I couldn't get out of the 12 day business trip that I have to take.  It will be heck for me!  Opposite schedule, long days, no rest, roommate that snores!  I am really freaking out.
   My GP doesn't want to treat me until he knows what he is treating, and my first appt w/my rheumy is 2 months away.  On top of that I have been having a really hard time breathing.  My pulmonologist Dr. Crazyguy diagnosed me with COPD on paper but gave me a script for allergy meds.  Even slight exertion leaves me unable to breathe (in that scary should I go to the ER? way).
   I need to get back on my feet asap.  And I can't do that when everything makes me tired and the pain is BAD.  And the breathing is freaking me out.
   I need any and all home remedies that you guys have found that work for you.  Anything that is portable and hotel ready.  Any pain relief (especially the kind that travels well).  How much ibuprofen can I take at one time?  In a day?  Everything from my head to my toes is in pain.
   Any suggestions for things that I could ask my GP for?  He offered vicodin but I am allergic and after that he offered me nothing.  I think that he is just being cautious and I understand that.  But you all can understand my desperation, I hope.
   Thanks in advance for any ideas/help!
Thanks!
Trish
 
 


alim0nkey
Regular Member


Date Joined Feb 2009
Total Posts : 58
   Posted 5/25/2009 2:40 AM (GMT -7)   
Heck you sound like me about 3 months ago, I know what you're going through. You need to take care of yourself. That sounds like a nightmare of a trip you have to take. For a start if you have to share with a room mate, I suggest you get yourself some industrial strength ear plugs! Works for me - not the rubbish foam ones, get some proper sound cancelling ones, mine are a hard plastic outer with a silicone centre. They are FANTASTIC. I got mine in the travel section of a major department store.

As for pain relief, my GP wouldn't prescribe anything either, same reason, he didn't know what he was treating. I was like, yes it's called pain, they may have taught you about it at medical school :-D The only thing that worked for me was Paracetomol and codine, not sure if you're in the UK or not and I suspect that most places you can't buy that. The only other thing that helped with me was to mix different pain killers - so I would take a 500mg Paracetomol with a 400mg ibuprofen. I was basically taking the maximum daily dose of both, which my GP said was OK as long as they were different active ingredients. Make sure you check with your pharmacist and the packet. Paracetomol was an effective pain killer and the ibuprofen was anti inflammatory.

Do you have good pharmacists where you are? I found my pharmacist far more helpful pre diagnosis than my GP. At least they were able to advise on what was available based on my presenting symptoms.

I'm now taking diclofenac, seems quite effective, but it wasn't immediate it took a few days for it to work for me, so not sure if it has a systemic effect. Might be worth maybe asking your GP for something like that.

omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 5/25/2009 3:34 AM (GMT -7)   
It sounds like you are also in UK. Yes. I also found that Paracetomol with codine works pretty good and it is available without prescription in the UK. Diclofenac is good for me too, but this will need prescription and will hurt my stomach if I don't take it with Omerprozone (stomach pills). Is there anyway your GP can order some blood tests for you?
DX SLE 1988; APS (Antiphospholipid Syndrome) Pred 10mg, Verapmil 40 mg bd (for migraine headaches), Cellcept 1000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Iron; Simvastin; pregablin 75 mg


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 5/25/2009 6:30 AM (GMT -7)   
Trish,

What comes to mind in a hotel room is a long hot (or warm) bath. For me, that is the most soothing thing for my pain.

And rest whenever you can! I know I don't need to tell you that because your body is already telling you to rest. Do you have any time off after you get back from your trip. I would think that a few days of complete rest would be in order.

Good luck! I don't envy you this trip & I hope everything works out ok.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/25/2009 10:59 AM (GMT -7)   
I have read that white willow bark is good for inflammation but don't know anything about it. Asprin helps inflammation but you must take it with something to help the stomach. I would call your pulminologist and tell him that any activity leaves you unable to breath or go to the ER. I wish I could offer more advice but that is the end of my knowledge of home remedies.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/25/2009 11:15 AM (GMT -7)   
Trish . . .

CALL your doctor and tell him/her that your are going on a 12 day trip and all the info you gave about it above. Tell him/her that you are in a lot of pain (as you described above) let him know that you have tried ibuprofen, tylenol, pamerin, etc. and that it is no longer working. Tell him that you TRIED to get out of the trip, but that you are stuck. And ask him to "PLEASE HELP ME!" Maybe he would consider a prednisone or prednisolone taper.

I hope you'll keep us posted!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


SadSickTired
Regular Member


Date Joined May 2009
Total Posts : 99
   Posted 5/25/2009 1:56 PM (GMT -7)   

Thanks for all of the good advice!  Ali- OMG your post made me smile!  The part about the pain and the doctor having heard of it- that was awesome!  And UK'ers omg- I wish I lived there!  Seriously?  Codeine no script?  Sorry but things are a little more difficult to come by here in the states (and they call the US the land of the free?  You have codeine and hot royals???  Not fair) 

Unfortunately, I spoke with my doctor about the pain and all of the symptoms and the trip he was still hesitant to prescribe something for the pain other than vicodin which makes me really nauseous.  Maybe I didn't make it clear how much pain I am in.  And the fact that I almost went to the ER last night because of breathing problems.  All of you guys' input has made me a little more confident about calling tomorrow and asking for something a little stronger.  I guess I just needed someone(s)- I know that's not really a word- to tell me its okay to ask.  I come from a bite the bullet kind of family- I have passed kidney stones without anything (ouch).  But at least they stop moving for awhile- this kind of all the time stuff is draining!

Last night I went to my basement (not finished and it kind of creeps me out) to get the ONE thing I actually have stored down there.  It was about 1 am (I like the night life- but not to boogie-no sun LOL) And as I was walking down the steep staircase a frickin BAT flew into the main room!  I was wearing slip ons and no lie- I jumped out of my shoes!  I turned to RUN (which I try never to do) up the stairs and literally left one shoe on the floor and one on the steps!  And so of course I was out of breath- literally.  And it got worse once I started to cough (bad barking cough).  I couldn't catch my breath.  So that's what was up with the ER.  I really thought it was the best thing.  But a hot shower opened my lungs up enough to let the air through.  One more thing to tell the doc- Am I high maintenance or what???  I can't even run up stairs anymore-ugh.  Thanks for letting me vent!

Oh I did what any red blooded girl would do about the bat- I called my Mommy and Daddy! wink


Thanks!
Trish
 
 


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 5/25/2009 4:37 PM (GMT -7)   
Personally I'd ask for Lortab. Darvocet didn't do much, but the Lortabs seem to take the edge off the pain without making me too groggy to function. In fact they seem to give me a little extra energy. I have a friend who's taken Lortab for 15 years for Fibro with no ill effects. I am unable to take any kind of NSAID due to horrible skin reactions, so tylenol+narcotic is my only option. I've read that caffine increases the analgesiac properties of tylenol and aspirin, so have a cup of coffee when you take something and the caffine will help it work faster. Sending good thoughts and prayers, oh and a cup of coffee.

Jennifer

PCP pretty convinced- Lupus , Taking plaquenil,Propranolol,  Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab.  Prednisone 15mg daily added 03/09.   Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.

 

 


honbunnie
Regular Member


Date Joined Mar 2009
Total Posts : 31
   Posted 5/25/2009 5:25 PM (GMT -7)   
I agree that a dose pack of steroids would probably help alot with the pain and the shortness of breath ( it worked for both on me). I would not leave town SOB. Take the vicodin with food and see if that helps. I take 600mg Ibuprofen 4 times a day if needed. Call Crazy Pulmonologist and the GP for help.

honbunnie
Regular Member


Date Joined Mar 2009
Total Posts : 31
   Posted 5/25/2009 5:28 PM (GMT -7)   
I just realized that some one may not know that SOB =shortness of breath.  I am a nurse and I forget sometimes about abbreviations.  That one looked funny to me..LOL
 
 

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 5/25/2009 5:35 PM (GMT -7)   
Hi Trish, I am sorry you are in so much pain but I agree with the others about calling your GP and explaining to them the pain and breathing problems you are having. Maybe they would give you a Medrol Dose pack of Pred. Also, a heating pad works wonders for me.

Another pain med to consider is Tramadol, it works better than Darvocet but not as good as Lortab, which makes me itch like mad!!!!!

I hope your trip goes well and that you find some relief soon! Take care
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 5/26/2009 7:19 AM (GMT -7)   
Trish,

Like Stacie, I take Tramadol. My doctor won't prescribe narcotics for me because she knows my pain is chronic and she doesn't want me to become addicted. However, she gives me as much Tramadol as I need. It sure beats tylenol.

Thinking about you,

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


SadSickTired
Regular Member


Date Joined May 2009
Total Posts : 99
   Posted 5/27/2009 12:46 AM (GMT -7)   
I called my doc and he called in a script for Tramadol (I didn't even ask for anything specific- you guys are psychic!) Anyway I was reading some scary stories about drug interactions between Tramadol and SSRI's (I take Zoloft- max dose 200 mg/day). Have any of ya'll heard about that? Any validity to it?
Thanks!
Trish
 
 


dbboles
New Member


Date Joined May 2009
Total Posts : 3
   Posted 5/27/2009 6:34 AM (GMT -7)   
You need a check x-ray ASAP. Pneumonia is a huge problem with Lupus patients and you have all the symptoms. Your doctor is NOT listening to you. Maybe I've been spoiled, but any time over the last 20 years when I've had such terrible symptoms as yours, my rheumatologist got me in post-haste and did not make me wait for months to see him. Thank God my lupus is stable now, with small amounts of prednisone each day.

LovedbyHim
Regular Member


Date Joined Mar 2009
Total Posts : 98
   Posted 5/27/2009 1:12 PM (GMT -7)   
Hi Trish, Oh My Word what a mess!!! I'm not sure I have any words that can help, but I will prayerfully try. I have neighbors that are loud when I need sleep, so I wear earplugs or I put sloothing music in a head set until I can drift off to sleep. I'm so sorry to hear of your pain shakehead , truly I am. I gotta tell ya, the Lyrica really knocked the burn out of my terrible pain. Hot baths and extra strength tylenol helped a little. I'm not sure of what to think of full body aches with lung issues. Scares me to think of it. COPD leaves you really vulnerable. I think i would go the ER route myself. Please know you are being prayed for right now. God wrap His arms around you and bring you relief soon. Blessings dear girl, Tammy
I have SLE, Raynauds, mitrol valve prolapse,Haushimotos thyroiditis.
 
Meds I'm on are Prednisone, Vitamin D, Hydroxchloiquin, amitriptylin, levoxyl, colchcine, mobic, flexeril, and lyrica
 
Rom 8:18-19 "I consider that my present sufferings are not worth comparing with the glory that will be revealed in us." 

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