Learning to cope. Any advice?

Hello. I'm Hailie and within the last year have been diagnosed with SlE lupus and finromyaglia. First came the diagnosis of lupus then 7 months later fibromyaglia. I am 26. I planned this active family oriented life, I have a wondeful boyfriend and we have no children but desperately want (but wouldn't dare try now) and now I am feeling a loss because of how careful i have to be because of my stres and physical activities triggering my illness. Any advice on how to cope with this new Path been given?
The worst symptoms I suffer with are exhaustion, brain fog, confusion, pain in feet. These have ultimately lead to me being off work (I am a nurse). I am taking plaquinil 400 mg daily. Naproxen 500 mg twice a day. No change and it's been 1 1/2 months since beginning the medications.
All responses are welcome. Looking for all the support I can get. Xoxoxo lots of love.
Hailie
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Hi Hailie:

Welcome.

There is much information in Fibro 101 that might be useful.

I don't know anything about Lupus. I am just curious about you taking Plaquenil and Naproxen. They are both used for Arthritis. Is Lupus treated with NSAIDs also. I did read of someone on the Arthritis forum who was taking Plaquenil for Osteoarthritis. It is also used for Rheumatoid Arthritis.

Do you wear orthotics at work? I am on disability but I need orthotics for problems I had with my feet. I do have Osteoarthritis in a number of joints and a full body bone scan showed foot articulations. All of the mild uptakes were noted as, in keeping with Osteoarthritis. My neck and headaches are the worst.

I worked as long as I could which ended up to be in my late 40s. In the end I could not drive to work. I slept all the way into and home from work. Many kind people woke me up at the end of the line so I didn't head back again. Is your workplace aware of your health challenges? Mine was but they really did not know how hard it was getting to do my job.

There are a couple meds for Fibromyalgia. Lyrica and Cymbalta. Some people are finding Magnesium Malate or Malic Acid to be a help. I am on a different type of Magnesium but may try the Malic Acid. Just read a post that someone has pain relief from oregano oil. I do use pain creams. Some people get relief from pain with Tramadol. Everyone is individual when it comes to medications.

Not at all sure what to suggest with brain fog and confusion. It is an unwelcome part of Fibro. I do make lists of things now. I used to be so good at organizing without lists, not anymore.

There are many very nice and knowledgeable people on the forums who will offer support.

Loring

Osteoarthritis in Multiple Joints, Fibromyalgia, Neuralgia, Chronic Daily Headaches, I.B., Hard of Hearing...

I am 70 and was diagnosed at age 64. It's trial and error sorry to say that you come what will help you the most.
I take Cymbalta, Magnesium Malate, busperone and I also go to 2x a week warm water exercises.
Just coming off a 3-day flare. It was good to get outside again today.

So no pearls of wisdom just be patient. Try things until you get yourself under better control. There are worse things to have.

A niece went to Mayo for her fibro and tells me there's no magic bullet. This forum is good for you to get ideas from.

Good luck.
Barb

Thank you barb for your advice. I didn't know someone could get diagnosed so late in life! Did you always suffer from the symptoms? It seems this illness has so many faces!!
And Sherrine I look forward to getting to know you aswell! I'll seek out Joy...thank you for letting me know. I share daily exercise with you....I try each day to do my yoga practice...some days it's only meditation but still I find it also helps me so much!
I have used buscopan....it's a muscle relaxer but just OTC so it may not help as much??
I'm going to look very closely as this fibro 101 form!
Thank you so much xoxo

Hi Hailie

Like many others here I was diagnosed along with immune disorders. Maybe see a rheumy , they have a better understanding of FM.

Exhaustion is part of FM. I think we all have ways of coping that works for us. It's so individual, everyone is different. It takes time to figure it out, and understand our limitations. Don't over do. That's a big don't.

Be sure u have all the blood tests necessary that can show other things involved that can be treated. I take vit-D, B-6,B-12 and fish oil..many supplements. I use sugar substitute in baking anf stay with clean foods. Especially no sugar watching foods & I eat as much fresh veggies and fruit as I can. Know what sets off a flare and cut down on stress in UR life.

Sherrine, fibro 101 really has some great ideas. I take OTC meds and topical creams . A mixed bag of treatments to many to mention. My fav a Message!

Hallahan, I exercise too Pilates. Water is even better . I'm 65.
I have OA , PSA. Total hip join replacements both hips and a lot of back issues. So I have to keep moving or get out the oil can!

Loring so sorry u have head aches and foot issues too. I use MBT shoes to walk in when I have sore joints and muscles. They r like walking on soft sand and help my sore muscles and feet & arches. These shoes cut the pain down significantly. I wear orthotics in my regular shoes.

Hi Kate, your to young for FM. You have my support as u freely give yours. It's a difficult diagnosis to cope with. I wish u the best.

I agree with all the advice given. There is no magic bullet. There are always the good days!

Hi, Hailie. I saw your post over in lupus forum.
Yes, it stinks to get both of these boogers. I just deal with the issues as they rear their ugly heads. I take the natural route as much as possible. I do take plaquinel for the lupus an RA. I try to get by using Tylenol , heat, and topicals. Once in awhile I have to pull out the big guns and take my tramadol. I'm trying to save the big painkillers for later in life because I know I will need them the most then. I take predisone in seven day burst packs as needed. I also avoid UV rays as much as possible.
check with you doctor on certain vitamins and minerals because they can trigger lupus flares by boosting your immune system.