? what are some of your stories? | Arthritis Information

Hi, I was just diagnosed a little over a month now..and am coping with the pred like all of you are...and I love reading all your posts..(thank you! it reallly helps)

Cathi, how much prednisone are you taking? I had lots of side effects until my dose was lowered. Having said that, some of my sympotms have returned. My doctor said it will usually run its course in 2 to 3 years, and some never are cured

I think a positive attitude really helps, but sometimes we need to vent, and this is the place to do that!

Blessings,

wildflower

Hi Cathi,

I am 53 and was diagnosed 14 months ago with PMRA. I could not move my upper torso, and my arms, hands and wrists were painful and went numb when driving. I could not go up stairs without pulling myself up with the handrail. Getting in and out of the car was sad. I had to literally lift my legs up and put them on the ground.

In the beginning my PMD thought that this weakenss and pain was caused by two life threatening illness that occured in the months prior to my being diagnosed with PMRA.

In May of 2006 I blew three blood clots. One in my left leg, that sent showers of others to both my lungs. I could not breath and almost died. I was put on Coumadin after a eight day hospital stay. I was doing great, and then in November 2006 I suffered from kidney failure after eating a "healthy" salad at Taco Bell. I was ill for a week with what I thought was a stomach flu. When I was not getting better, I went to the ER for treatment. It was discovered that I had renal failure. Amost did not make it that time either. My last meal was at Taco Bell, so, among all the other folks getting sick, on Long Island and NJ, my case was reviewed and all of the symptoms added up. Why I had gotten so violently ill, and then the kidney failure then made sense. I have a strong immune system from working 25 years in an ER. When I caught something, I usually recovered quickly. This time I went down like a ton of bricks, and stayed that way.

Normally, I am not a fast food junkie. But, due to my involvement in animal rescue and the fact that I was waiting for a rescue transport that was running late, I sent my husband out to get something to eat. He wanted Taco's and having been a vegetarian at the time, I ordered a meatless Taco Salad. Hubby did not get ill because he ate what is considered a precooked meal. We were actually a study group for the Health Department because they were trying to determine the cause after the onion theory did not hold up.

I was suffering from muscular weakenss from the kidney failure, so the symptom's I was having in February were attributed to that. But, the pain in my pelvis and low back got worse, and I could not turn my neck. My PMD noticed my Sed Rate was high, 80 and referred me to a rheumy doctor. He knew in the first 30 minutes what was wrong. He sent me home with the promise that the Medrol he was prescibing would do the trick. It did within two days.

I started on 12 mg went down to 8. Flared and had scalp pain, so bumpted up to 24 in December of 2007. I am currently on 6mg. I have had all the wonderful side effects. Originally I lost 20 lbs on the Medrol. Now I've gained back 15. I had the round face, the stretch marks, the bruising and skin tearing easily. I looked like a battered wife. My blood pressure went up, I developed osteoporosis, glaucoma, and feelings of anxiety. Coupled with hot flashes from menopause, most days, I exhaust myself trying to keep from over reacting to every day life.

At the lower dose, I ache, and am stiff. I still can not go for long walks or shopping without getting fatigued or my back and spine hurting. All the major diseases have been ruled out by a neurologist. The ache in my legs which got worse in the late afternoons and evenings was diagnosed as Painful Restless Leg Syndrome. I take Neurontin for this.

While I wanted to be taken off of Medrol, my doctor told me I would have no quality of life.

He saw his first case of this in 1959 when he was a resident. His patient had been in bed for six months and could not move very well, and was in great pain. Back then it was called Senile xxxx gout. So, in all these years, prednisone has been the only drug that seems to really work on alleviating symptoms. For those unable to take prednisone, there are the usual combinations of anti inflammatories and pain medications.

I keep hoping that through my tears of dispair that one day I will wake up and this will all be over. I'll be able to run up stairs again. My rheumy is honest, and told me that it may never go away. So, on with the fight to live and move about.

Donna, NY

to all of you fellow pmr sufferers and to Donna, i cried when i read your post, you have suffered so much.

I am 70 years old, have had pmr for 6 years, i think it was from stress, allways had a stress ful life, husband, four kids, money problems, marital problem, kid problems, but gee thats every day stuff right, had lots of surgeries 5 in all and 5 pregnacies. then after being married for 45 years to the same man..he died of a heart attack in bed one night and i found him i n the morning, cold and blue, i lost it, did not know what was going on for about 6 hours, when i asked my daughter what the h... is the funeral director doing in daddys closet looking at his suits? they called the dr. said my body and mind shut down and i should come around, i did.

Then the pain started in the legs, pelvic area, and hips. the fatigue so great you think you will die. it took almost three years for someone to figure it out, pred helps but not a lot i am still in pain and the fatigue is still there. i personally do not think it is ever going to go away, for me anyway. i have trouble walking, climbing stairs and the smallest chore is like climbing a mountain. so Donna as you said on with the fight to live and move about

i wish you all lots of luck, and to feel better.................Georgiana

wow, i am humbled by your answers.

i think since this has happened i have cried more tears learning what others have had to live with that me in my previous oblivion to such things, had no idea of what living with pain could be like.

to sandy..thank you for your note..i am soooo happy to have found this forum..it is my every morning every night check in place.

to wildflower, i am on 15 mg. but have no chin and a rubber tummy and boy i did not neeed that one. going to decrease at the end of this month according to rhemy..still have pain..tho not like before of course. still i can feel it .

to donna..i am so sad and sorry that you have had to go thru so much. you know i am believing with you that you will be able to run up the stairs again. i know that miracles can happen..and why not?

to georgina...i am so sad and sorry about your loss, i too have 4 kids and money problems these past few years and i also think it was deep stress that brought this on. but we do have these kids to live for ~ eh?

so as donna says..on with the fight to live and move about.

thanks for your stories...stories help somehow..

lots of love and luck and warm days

cathi

Wow, I agree with Cathi--I am humbled! And yes, our families are an important reason for making the best of PMR. Unfortunately that same family can be the source of much of our stress. My children are grown, but that doesn't mean we stop worrying, stressing, etc. about them. At the riisk of sounding sexist, I also believe that women usually carry the brunt of family issues. Men just don't seem to get as anxious ( at least in my world).

Oh Donna, I am so sorry for all of your problems--you have been through so much!! You are an inspiration, and I pray that you will feel better every day. Are those around you understanding and sympathetic? I have had a %$## of a time getting others to 'get' PMR, but I have quit trying. They think I have arthritis or fribromyalgia.

Georgiana, I am so sorry for your loss. That is awful that you didn't get a diagnosis for three years! I had to wait 3 months before anyone believed me--I don't know how you kept on. I wonder if your pred. dose is too low. Having said that, mine IS, but I am choosing to do this becasue of the side effects from a higher dose. I have times when I feel almost normal, but after sitting for any length of time I have trouble standing, and I walk with a very stiff gait.

Thank you all for your stories. You all have given me this connection that I haven't felt in a long time.

Wildflower

It seems we all have had some of those "moments" in our lives. I had tears in my eyes when I read about your husband, Georgiana. Your mind shut down to protect you. I've been around people dying since I was 15 when I worked in a nursing home.

I found my father dead in 1985, he was 58. He had come to visit me in NY from SC. He wanted see my summer home in the Lake George area. He had bypass surgery three months before. The doctor had told him to get his affairs in order, because he had a short runway in front of him. Gave him a year or two. So, he decided against everyone's wishes to come up. I had a fear he would get sick. However, he decided to do it anyway.

Probably as one person said, he was coming to me to die. He went to bed, and I had checked on him at 2 AM when he got up to go the bathroom. He died sometime before 6AM according to the coroner. I showed them him medical records, and they released him from the house to a funeral director, I found in the yellow pages. The images get easier to handle with time. You find you can survive these "moments" and continue on with sunrises and sunsets.

I have a supportive husband, who I'm sure gets frustrated with me, and my new limitations. My daughter, also, who is 30, has helped keep me from losing my spirit to fight this. My husband and I are a combined family. All children are out of the house and my husband has retired. We are in the process of moving to PA. Our NY home is going on the market and I've been packing, slowly.

The PMR is active, so it's the usual aches and when I finally surrender, I sit with the heating pad on my back and take Ultram which is the medication I take for pain. I'm trying to avoid taking anything stronger. My friends have not given up on me. I go out to dinner with them when I feel up to it.

I'm not sure people really understand this disease. I have a great doctor, who knows it is hard to deal with. I see him on Thursday. I am going to continue to see him even though I am moving. I'll see him and visit with my family. My mother is still living. My younger sister has ovarian cancer that is in remission.

I'm hoping that this disease will get on someone's agenda and the public and people will become more aware of it's impact. Sadly, someone in the public eye will have to get it.

I know that people see our struggles. When I get frustrated with myself, I realize that there are folks going through worse ordeals. I have fostered special needs dogs for a rescue, but because of the move, I can no longer do it. It seems that taking care of them keeps my own frustrations in perspective.

All of us seem to be in various stages of this disease. I read and read when my body suddenly does something new. Right now, the stretch marks that had faded out after giving birth thirty years ago, are making a new appearance. I have fat pads in places I fear to describe.

My doctor monitor's the Medrol drops. I don't reduce without his OK. I fear if I drop too fast, I will become totally useless and miserable. I may ask him to bump me up again to maybe 6.5 to see if it makes a difference with the aching. It seems this may last awhile from the stories I'm reading.

Donna, NY

Hi Donna,

Yeah, it does help to hear others' stories. Your story about your dad is a sad one, but it sounds as if you were a wonderfu daughter to him. Your dad wanting to be with you when he passed away is so bittersweet.

Donna, what are Medrol drops, and are you on prednisone? I forgot my pred. today and will have to wait 'til I get home for lunch to take it. I can really feel the difference. I am hobbling (is that a word?) instead of walking.

I try to think positively--yesterday I sat in the sun for a while and watched my flower garden slowly come to life after our long winter. The warmth of the sun was so healing.

Donna, I hope your moving goes smoothly, and thanks for taking care of those special needs dogs. What a good thing to do.

Be well, all

Wildflower