dealing with the pain

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hez
New Member


Date Joined Jun 2008
Total Posts : 17
   Posted 6/10/2009 11:06 PM (GMT -7)   
I am new to all of this, but I have been having joint and muscle problems since last Aug...I was just diagnosised with Lupus on May 28, 2009.  I have the red face, raynaud's, dry eyes, hands swell, neck breaks out in a rash, I lost about 10lbs and wasn't trying too... so tired, weak, and in a lot of pain.  My rheumy put me on plaquinil and mobic, but when the mobic doesn't help your pain what is the next step... load up on tylenol?  Any pain manangement suggestions?  I lost my last job, I was out on medical leave for lupus and they did not grant me my leave, so now I am unemployed and stressed out to the max... looking for advice thanks!!  heather

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 6/11/2009 5:06 AM (GMT -7)   
OH Heather...I am so sorry about your diagnosis! Healing Well has been a great source of inspiration and advice from some veterans with Lupus. They are very helpful :-)! The pain and swelling is something I have had to learn to cope with. Not very much will give me relief anymore. They put me on tramadol, darvocet, and muscle relaxers for pain and it seldom works. Occasionally Aleve or advil will help. I would definatly advice getting a heating blanquet or pad, when the joints get painful, wrap up in the blanquet and it should help a little. Also, sometimes a nice warm/hot bath with epsons salts helps me. With the raynaud's make sure you keep your hands and feet warm. Sometimes even during the summer, I will have to wear gloves if it is too cold in a store or at work. I also have bought heating pads to put in my socks and gloves and this helps wonderfully! I know other people will be on to help you out and give you some great advice! Also, plaquinil will take awhile to get in your system, hopefully once it does you will find a lot of relief!

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 6/11/2009 6:45 AM (GMT -7)   
Hi Heather. I like Tylenol Arthritis because it can give me relief for a few hours. I also like baths with epsom salts. As for mobic, it didn't work for me. Most of us have tried several prescription meds for pain before we find what works best. I take plaquinil and celebrex daily and neurontin each night. My most important comment is that plaquinil takes a few months to kick in. I'm so sorry u have to work while feeling so awful. I hope u get some relief soon. Love, Butterflake

Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, IBS, stage 1 kidney disease  Rx: Cellcept, plaquenil, prednisone, celebrex, lisionpril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin, xanax, ambien, neurontin, tylenol arthritis, flexeril, nasonex, phenegren, vitamins, Acupuncture.  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 
 


hez
New Member


Date Joined Jun 2008
Total Posts : 17
   Posted 6/11/2009 6:58 AM (GMT -7)   

Amy,

Thank you for your input... I have a heating pad that helps but I never thought about a blanket or the bath with epsom salt thank you every litte tid bit helps... My doctor refuses to put me on any kind of pain medication (this is my general doc) he believes to many people become dependent on them which may be true, but for people that experience chronic pain...I don't see what the problem is... being young as you are too or anyone for that matter should not have to be in pain if pain relief is available especially since plaquinil can take up to six months to work.  Again thank you!  I look forward to being a part of this group and learning from everyone of you as well has having the support and providing support for others.

Heather


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/11/2009 12:53 PM (GMT -7)   
Heather,

My doctors will not give me narcotics for pain because of the dependency issues, but they do prescribe tramadol. It's a synthetic codeine with tylenol and although it doesn't work as well as something like lortab, its better than simple tylenol. And it's not addicting. You might talk to your doctor about it.

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


LovedbyHim
Regular Member


Date Joined Mar 2009
Total Posts : 98
   Posted 6/12/2009 4:06 AM (GMT -7)   
Hi Heather, gosh I'm sorry to hear about your situation. I don't understand why you were not given FML. Is there a grievance procedure? As far as the pain in joints goes, it took the same drugs you are on, weeks to work. When that didn't work I used tylenol, hot baths, hot packs, lots of rest and made it through. Elavil also helps me with the joint pain. I just said a prayer for you Heather. 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." 


hez
New Member


Date Joined Jun 2008
Total Posts : 17
   Posted 6/12/2009 8:47 AM (GMT -7)   
Thanks everyone for all of your information and kind words...I will ask my doctor about tramadol.  I am currently on plaquenil, mobic, xanax, flexiril, crestor and ambien (but I still can't sleep thru the night).  As far as my old work goes; I do have a lawyer and he believes they may have violated the American with Disability Act.  He said I would not have qualified for FMLA b/c I had not been there long enough, however he is checking on the other.  Is lupus considered a disability under the Act?  He was not sure, but said that a lot of things had changed since the first of the year.  I thank you all for your support and again all the information... I wish each of you the best as well!
 
Heather

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 6/13/2009 4:52 PM (GMT -7)   

Hi Heather,

I too am sorry to hear of your health issues as well as being dismissed from your prior job due to your illness. To answer your question, yes, lupus is considered a disability under Social Security Disability, so you should be covered under the disability act if you had a diagnosis.

I am on massive amounts of pain killers and still have a lot of swelling and joint pain, so I'm not sure there is a good answer out there for individuals like us with chronic pain. I have been on Norco for a year now, it helped control the pain quite a bit in the beginning, now it's like taking candy. In March of this year I began seeing a pain management doctor, he has added oxycontin to my list of meds. When I first began taking the oxycontin it was as though I had a new lease on my old life, I could actually go out and run errands, go out to eat and things of this nature without massive set backs like horrible exhaustion or headaches, etc from performing these activities. That said, I have been on the oxycontin now 3 months and my body is already screaming it needs something more intense to fight of the effects from the summer heat and sun. I was hesitant to start the oxycontin to begin with because of the addictive traits is has, now my body is needing more just to get through the day, I am just living with the pain because I do not want to add more narcotics.

I am currently alternating a heating pad and ice pack on my swollen and painful joints. This helps somewhat, it does relieve the pain to some degree and along with lunesta and melatonin I am able to get some sleep. You might try 3mg of melatonin along with your ambien, of course ask your doctor first, but this is what my rheumy suggested for me and so far it has helped me get some sleeep.

You will find lupus to be a very mysterious disease, by this I mean one never knows what might be of help and what might not. What seems to work one day, might have no effect the next. Our world is basically trial and error.

I wish you the best, good health and restful nights sleep.

Melissa


Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


BigBry
Regular Member


Date Joined Nov 2008
Total Posts : 106
   Posted 6/17/2009 1:52 AM (GMT -7)   
Heather about your unemployment can I ask what Country and Province or State you live in. I've had a bit of education in LTD, duty to accommodate and LTD from pensions. Maybe I can help???

Bryan
DX: IBS 00, +ANA 05, Depression 06, MCTD & Sjogren's 07, GER 08, NO Sjogren's 09, Fibro and all over tendonitis?????  
Life is what you make of it.  Just something I try to remind myself every day.


hez
New Member


Date Joined Jun 2008
Total Posts : 17
   Posted 6/17/2009 7:02 AM (GMT -7)   

Bryan,

I am in the US, in Iowa... Scott county the place I worked was in Clinton, IA Clinton county.  The lawyer I thought I had did not take the case... I am not sure if I even want to persue it anymore... it is taking to much time and energy... that is for sure!!  However, if you would like to help or have further information, I would appreciate it.

thank you,

Heather


BigBry
Regular Member


Date Joined Nov 2008
Total Posts : 106
   Posted 6/18/2009 1:29 AM (GMT -7)   
It'll take a little research (state/federal laws) but i'll see what i can do. My dad is from West Union Iowa.

Hang in there

Bryan
DX: IBS 00, +ANA 05, Depression 06, MCTD & Sjogren's 07, GER 08, NO Sjogren's 09, Fibro and all over tendonitis?????  
Life is what you make of it.  Just something I try to remind myself every day.


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 6/21/2009 8:33 PM (GMT -7)   
Hi Heather, I just wanted to check in an see how you're doing. Ya know I am on a ton a pain meds but truth be told I could take 20 a day and they wouldn't help. I'm on vicodin and percocet. You take them for a month and that's about how long they work. Plus the tylenol in it kills your liver. I asks my dr. to give me an anti inflamatory and she wouldn't but she gives me this stuff????? I didn't see anything about being on predisone. I recently had to stop taking it because of other health issues and I can really tell the difference. Maybe your dr. can put you on that.
I hope you find something that will help you get some sleep
hugs
carol
 CAROL
 scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Detrol LA,spironal,Lisinaprol,furosemide,azithromiazin,plaquanil,pottassium,Citrocal,vicodin,percocet,tons of inhalers.
 
Bear ye one another's burdens
Galatians 6:2 KJV

 
 


hez
New Member


Date Joined Jun 2008
Total Posts : 17
   Posted 6/24/2009 8:01 PM (GMT -7)   
Carol,
 
Thank you for checking in... I have actually been feeling a little better...I think that is strange that your doctor would not put you on anti-inflammatory medication... It is crazy to me how different all doctors are, in what the believe, perscribe, or even how one may feel compassion for a person or empathy, and then others act like they don't really care at all and just treat you and then street ya...I have been busy trying to find work but have been unsuccessful thus far... so I am focusing on school work and wishing I could go out in the sun, but I learned my lesson with that already for the year... I have a rash all over my arms and legs and it is itching like crazy!!  I don't know if it is from the medication or what... I have never had this before...but my rhuemy did warn me about the sun... I being stubborn as always just didn't listen unfortunately...lol...but really is that what the sun does to you?  I hope that you are doing well...again thank you for checking in on me... take care,
 
Heather

hez
New Member


Date Joined Jun 2008
Total Posts : 17
   Posted 6/24/2009 8:07 PM (GMT -7)   

Melissa,

 

I am sorry to hear that your pain medication is not helping you like it once was.  I saw in your post that the summer is difficult for you with the heat...how does the summer affect you?  I am asking because I have not experienced summer yet... I tried the sun but ended up with a rash all over my arms and legs and it itches... and I seem to swell up in my hands and feet b/c the heat... I agree with you this is a very mysterious disease...I never know from one day or another how I am going to feel... thank you for letting me know that lupus is covered under the American with Disability Act.  How are you feeling now... have you talked to your pain management doctor?  Hope you are ok!  Take care,

 

Heather


BigBry
Regular Member


Date Joined Nov 2008
Total Posts : 106
   Posted 6/25/2009 3:18 AM (GMT -7)   
Hi Heather, I'm still doing research, but here is the Iowa Human Rights Commision/Persons with disabilities site

http://www.state.ia.us/government/dhr/pd/index.html  

And here is the Disability Rights Guide in PDF format

http://www.state.ia.us/government/dhr/pd/images/pdf/Disability%20Rights%20Guide.pdf

and in HMTL format

http://www.state.ia.us/government/dhr/pd/images/html/Disability%20Rights%20Guide.htm


If you call them they should be able to give you additional info

Bryan


hez
New Member


Date Joined Jun 2008
Total Posts : 17
   Posted 6/25/2009 8:21 AM (GMT -7)   
Bryan,
 
Thank you so much!! smilewinkgrin

SMithy 14
New Member


Date Joined Jun 2009
Total Posts : 1
   Posted 6/25/2009 8:52 AM (GMT -7)   
HI, I am not sure if I am doing this right.
I am not necessarily responding to anyone, just trying to ask a question. I have recently been to see a Rheum who thinks I have a "mild" form of Lupus. My joints are all very sore and my hands and feet have been swollen for months. I am off on a medical leave from work at the moment and am to go back to see the Rheum in August I guess for a more definitive diagnosis. In the mean time I am taking plaquinil and Naproxyn (since May 28th) and feeling some relief from the NSAIDS.
So, on to my question.....being as I am off, and we promised our children that this summer would be the summer we got a puppy...we decided to go ahead with the plan and we got an 8 week old golden retriever. I never thought for a second this might make my symptons worse again. However, since we got him last friday, I seem to be suffering from allergies (which I NEVER have before) and sudenly my hands and feet and knees are worse again.
Is there a connection? Could I suddenly have developed allergies to dogs BECAUSE of my lupus/meds/anything else???  I already have a cat and it never bothered me....
Does anyone know? I have tried to find some literature, but havent' had any success. I feel so stupid because I never thought to ask my doctor about it, thinking it would be just fine. Now I fear we will have to say goodbye to our puppy....my kids will be devestated.
Please help if you can.
Thanks,
Smithy

BigBry
Regular Member


Date Joined Nov 2008
Total Posts : 106
   Posted 6/27/2009 3:38 AM (GMT -7)   
Hi Smithy, Ask your Doc to send you for allergy tests to see if it is the dog dander or if the dog is just bringing in extra pollen in it's coat. There are breeds of hypoallergenic dogs such as Labradoodles that you could get if it is pet dander.

Bryan
DX: IBS 00, +ANA 05, Depression 06, MCTD & Sjogren's 07, GER 08, NO Sjogren's 09, Fibro and all over tendonitis?????  
Life is what you make of it.  Just something I try to remind myself every day.

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