momij (@momij)

Yes, I believe that's right. A lot of us have no other options than opiods. I'm personally not a candidate for a pain pump as my pain is from inflammation vs. a mechanical problem, or so I was told by pain management doctor candidate 1. I can't take any nsaids as I've had kidney failure and have chronic kidney disease. I've tried sulfasalizine, cymbalta, gabapentin and all sorts of others and had terrible side effects. So I'm on prednisone for life, Remicade infusions every four weeks, oxycodone, muscle relaxers, meds for depression and anxiety. I also do yoga, breath work, warm water therapy, short walks, stretching, aromatherapy, tens machine, lots of baths and I can't even remember what else. We need to be kind and know that everyone has a story that we don't know.

It's been such a huge help in my quality of life!

I do my physical therapy exercise "routine" in a warm water therapy pool and it is one of the only times I don't feel pain – good luck to you.

bummer… maybe you could talk to him about recommending a pain management doctor?

Hi Debra – I attended a 3 day fibromyalgia program at Mayo in Rochester. I was skeptical but it was actually very helpful – I received a lot of helpful information and tools to deal with the pain and other symptoms. My husband also attended and that was helpful in that he then had a better understanding of what I was going through. I hope you get some relief.

Hi Lilgrizz, has your doctor already taken, or told you they are going to take away your pain medication? Do you see your primary care doctor for pain management? My primary care doc was unwilling to continue managing my pain meds and referred me to pain management. It took a couple of tries, but I really like my pain management doctor and she has been very helpful and respectful. And she manages my pain medications very well. I know a lot of people are having this kind of thing happen, but not usually if they're seeing a pain management doctor. I think it's the primary care docs who are scared of these "guidelines" and acting inappropriately. Hugs

I’ve been dealing with lichen sclerosis for around 3 years now. I had a lot of white patches, thickening of the skin on my perineum, atrophy (inner labia basically gone), itching, dryness, a lot of pain with intercourse. I started out using clobetasol ointment twice daily for around 6 weeks if I’m remembering correctly, and then slowly tapering down from there. I also use estrace cream vaginally which helps a lot with the dryness and to plump up the skin of my labia. I’m now only using the clobetasol once or twice a week for maintenance. I also use testosterone cream as I had almost no testosterone, and it really affected my sex drive and responsiveness. I’m now able to have intercourse without pain, and the other symptoms are under control quite well but it was a long road, and hard to get our sex life going again after such a long time. We also saw a sex therapist at the women’s clinic at Mayo (Jordan Rullo) which was very helpful. Good luck and hang in there – it can get better.

I have a love/hate relationship with prednisone. When my kidneys failed 5 years ago it saved my life. I was on high doses to begin with and then tapered down. The prednisone put my minimal change disease in remission… then I started weaning off and began having excruciating pain all over – I believed it to be from the prednisone withdrawal…. then I had a relapse of my kidney disease, again helped by higher doses of prednisone… then began to wean again… and then the pain again… ended up working with endocrinology to change over to hydrocortisone and taper that VERY slowly as I had been on the prednisone long enough to now have secondary adrenal insufficiency. I was exhausted and still in pain after that. I was diagnosed then with spondylitis and take 5 mg daily to help keep that and my kidney disease at bay. I hate taking it but every time I taper below 5 things get worse for me. At 5 mgs my side effects are not insignificant but are tolerable mostly – I have gained 65 lbs., have a puffy moon face and neck, thin sin, trouble sleeping, anxiety, bruising, irritability, am ravenous… at the higher doses I become much puffier, hungrier, angrier, anxious, sweat a lot, have really bad hot flashes. And though my bone density scans come back normal I have broken my ankle doing absolutely nothing and have had 2 teeth break off at the roots and needs implants.Good luck!