dealing with the pain

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,

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

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

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

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

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

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

Bryan,

Thank you so much!!

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