NEWBIE

    Hi everyone, New here I see there is great info on here thanks for all the posts and information in advance.  I have had fibro for over 15 years have really been having a rough year.  In dec of 2010 I was very sick over the holidays and after that I struggled with just feeling better then in march 2011 I got a severe rash over my entire body (miserable) and the drs didnt want to do anything my dr was out on vacation so I saw a few who werent familiar with me so they werent very helpful.  They said o its a virus it will run its course.  by May still have the rash but cant even walk 100ft without being extremely fatigued and short of breath....so come to find out I was finally diagnosed with MONO...i had never had it when i was younger I am 40 now and so the Dr said it really would wipe me out.  I was off work for 5 months and really in my thoughts should still be off but cant live on the disability amt.  Anyway have had severe pain since the mono.  Muscles/joints on a day to day are 7-8 pain so the dr has me on Fentanyl duragesic patches and percocet for the pain. Then yesterday had injections in my hips because having a difficult time walking.  Im a nurse and on my feet 8hrs a night..which doesnt make this any easier.  This is on top of my usual Lyrica which used to be 75mg 2xday now its 150 2xday, 10mg flexeril usually 2x's a day.  The dr wants to also add cymbalta or savella but insurance is not approving so she is still haggling with them at this point.  But jus wondering if anyone else has had MONO with fibro??  any input would be appreciated thanks

Gina

Hi Gina,

Welcome to the forum. I am so glad that you have joined us. I am sorry that you are suffing so. And the fact that you have to work and be on your feet for so many hours.

I hope you have luck with fibromyalgia meds. I take pain pills and antidepressants. Also something for energy. You may want to talk to the doc about that. I am taking vyvanse, but liked adderall better. They were running short of adderall and that is the only reason I switched, but thinking of going on adderall xr. Which I probably should of to begin with. I guess this is how we learn.

I see Sherrine has directed you to fibro 101, it is a wonderful thread, I hope you take a look at it.

I hope that you feel better soon.

Hugs, Karen

Welcome Gringrin- I am sorry to hear about yur health issues. I am a retired nurse myself and I had to throw in the rag. I have noticed a lot of nurses are in poor health early. I believe it's all the pulling and lifting we done for many years. I had a home accident that caused mE to take disability earyly. It saved my life. I am ao much healthier now and have good control of my fibro.. I got off the hard core narcotics and went mostly to natural supplements. I now feel so human and ready to enjoy life some now. I know dissability is not for everyone, but it sure has saved me. I still have some bad days, but I can handle them on my own instead of running to a Dr. I did try accupuncture , but i dont think my guy new how to do it very well. I gave up early in the treatment and never went back. I do love heat wraps and I use voltran as antiinflammatory cream for my hips. I have improved so much by trying my own treatments with a safe guard in place. I hope you can do the same. Good luck!

Gina, I tried accupuncture but it didn't help me.  Actually it hasn't helped others either because that question was asked a while back on the fourm.  It's expensive and the only thing it did was lighten my wallet when it came to my fibro.  But, I'm hearing impaired and I did gain some hearing so there is something to it but it doesn't seem to help fibro patients.

 

I use malic acid/magnesium supplements and vitamin D3 supplements that help me.  There are links about these in Fibro 101.  I also take an alternative supplement called Curamin.  It has won the #1 award for pain relief in the alternative medicine field.  It does help me.  One day I forgot to take it and, boy, did I know it!  Here is some info about it.

 

http://www.greenpatriotism.com/?page_id=470

 

I checked out the doctor that wrote this and he is no slouch either.  I'm careful because there are plenty of scammers who are more than willing to take your money. 

 

 http://en.wikipedia.org/wiki/L._Stephen_Coles

Moist heat and gentle stretching exercises help also.  There is a link in Fibro 101 with some stretching exercises.

This is what I do, along with the massage that I mentioned in my other post.  I also do a daily gentle exercise.  I walk for my exercise.  Since you work and being a nurse, I'm sure you get plenty of exercise.  It's the lifting of heavy things...like patients...that will cause you plenty of pain.  If you can, get some handsome orderly to help you! 

 

Gina, I still always have pain but it's under control doing this.  When I take pain medication for arthritis, I take as little as I can because I don't want to be light-headed, dizzy, etc.  Sure, I need more relief but I don't want the side effects.

 

I hope some of this helps you and your doctors.

 

Sherrine

Hi GKINGRN

And welcome. You have found a wonderful forum filled with great info and very knowledgeable people who can not only listen, but often give advice and always give support. So, again I say, welcome to Healing Well.

You poor thing, having mono on top of fibro! Wow, that's enough to do you under! I feel for you in a lot of what you said. I am a retired RN for 10 years now. Wow, how the time has flown. I, too, am on disability. I also suffer from clinical depression for over twenty years. It is a chemical issue for me and it runs in my family.

I am 60 now and ten years ago I threw the towel in, so to speak. I could no longer keep up with my career. I was in administration, yet the fibro was very debilitating as well as my back pain. (I had a hemilaminectomy when I was 33.) I was diagnosed with fibro when I was 28.

So for me, the meds work, Oxycodone 15mgs as needed. Lyrica 200mg twice a day, lidoderm patches 12 hrs off and 12 hrs on, voltaren gel on my feet (where the fibro REALLY gets me sometimes) and sometimes flexeril 10 mg as needed. I also use a TENS unit for the back pain. You said you had hip pain. You might want to look into a TENS unit. Most places that sell them, will give you a discount, as you are a nurse. Sometimes, you can get it for free. It just depends on luck sometimes!!

Well, I hope I have helped a bit. I've never had mono, so I couldn't fill that request for info, but my heart is in this post and I encourage you to come back to the forum and let us know how you are doing. We really care and want to help anyway we can.

God bless.

Lindaloo

Thanks to all who replied and welcomed me it definitely is nice to have support and ideas that can assist in managing this miserable FIBRO. Sherrine I am also taking the fibromalic (malic acid and magnesium supplement, 50,000IU of Vit D3 a week until my levels raise mine was 11) But I will look at the info for the pain relief Curamin...thanks. Yes Lindaloo and chutz the MONO on top of the Fibro lol a cruel joke I thought I was chronic fatigued prior to the mono lol it was nothing to what I have been experiencing this past Year I cant imagine living like this for the rest of my life...still waiting for that magic wand to be waived and get some relief. Until then I do my gentle stretches and was walking a few times a week but then my hip started having the intense pain so only walking while at work. The cortisone shots seemed to have help my right hip, my left hip seems to still hurt but not quite as bad...she did say I might need more than one injection..so I will see her again next week so we will see. Great info on this site thank U all for participating and giving us the knowledge to keep moving fwd thank U

Gina