What now - lower back, hip & shoulder pain

[Chelee]

Hi Vicky,
You sure have had your share lately...my heart goes out to you...I know how stressful it can be. After reading your posts here it sounds like could have "Polymyalgia rheumatica"? I had never heard of it until my MIL told me about her friend that has it. I've heard so much about it this last yr. It sounds just like your symptoms. The way your pain came on in shoulders and hips...there is also inflammation involved which would explain the pain your experiencing. You can also present with high alkaline phosphatase results as you are. I couldn't help but notice you are just recovering from pneumonia too--it seems to be related also. Read paragraph below this;

>>>There may be a link between polymyalgia rheumatica and certain viruses, such as adenovirus, which causes respiratory infections ranging from the common cold to pneumonia; human parvovirus B19, the source of an infection that primarily affects children; and human parainfluenza virus.<<<

This may not have anything to do with what your experiencing but after my MIL's told me so much about this Polymyalgia rheumaticato that her friend has I couldn't help but wonder & thought I've just throw it out there just in case. You never know. (Just call me Dr. Chelee.) lol Here is a link that explains it from the Mayo Clinic.

http://www.mayoclinic.com/health/polymyalgia-rheumatica/DS00441

I hope they figure this out soon for you and can get you feeling better. Thats just not right that your doctor did not call you. She has to have a good idea of the stress your under...it's not right to leave you sitting there waiting. I know I would say something to her...and I know you will. Talk to the surgeon for ideas...that is a good idea. But something does need to be said so she doesn't do that to you or anyone else again. Let us know what you find out. As far as withdraws from Herceptin...I've never heard of that...but it doesn't mean it can't happen. I'm glad your pneumonia is almost gone...that's great. Now maybe you can relax a bit this weekend. Wishing you a very HAPPY MOTHER'S DAY. Keep us updated, & hang in there.

Chelee

[Ellie F]

Hi Vicky
No words of wisdom just wanted to say that I am so glad your scan was normal and the infection gone.Hope you feel better soon.
Love Ellie

[WolverineFan]

Hi Vicky,

I haven't been on the board in weeks bec/ I've been buried at work, but just logged and and am trying to catch up. So glad to hear that the scan went well. I have been incredibly achey (sp?), and actually thought it was the result of Femara. My hips, knees, and back. I've never had problems like that before, but I believe Femara can cause that, so if you are on an AI, that might be the cause as well. I am so glad that the scans went well. Happy Mother's Day to you and to all the her2 moms on this site!!

[vlcarr]

Thanks everyone. Hayley, just wanted to mention I won't be taking AI's. My onc said in my case I would not benefit from them.

I wanted to update everyone that I had an appt today with the lymphedema therapist I had worked with radiation. I told her about all the aches and pain I was having, the pneumonia, thrush, hand, foot and mouth, etc, etc and on and on.

I told her my shoulders hurt so bad there is no way I can do many of the lymphedema exercises since I have to hold my arms above my head.

She did a thorough exam and told me to not even worry about those right now. My right arm is 1 to 2 cm (depending on where she measured) bigger than my left. However, she did tell me to wear my sleeve every day regardless of whether I'm exercising or not.

She is going to start "body work" as she calls it on Thursday. She is going to be doing the myofascial (sp?) therapy on my whole body. She said I was so, so tight all over. I'm also going to be doing some work in the pool.

I'm looking forward to this and hoping this helps. I know when they did that after my mastectomy it helped me so, so much.

If any of you suffering from pain can get this I encourage you to do so. It's a very, very gentle type of touch.

That's just a short summary of what we discussed but wanted to give an update. I want to get off these pills........

[vlcarr]

Thank you all so much for your posts.

Chelee, I'm going to print that information and take it to my doctor next time I go which will be 06/24-the day of my last herceptin.

I also wanted to give you guys an update. I spoke to the nurse this week and she said they "suspect" I may have had Legionairre's (sp) disease. I must say that was a new one for me!!

I had to get a refill on the yeast medicine because the thrush seemed to be hanging around. It's better now.

I had my first visit with my lymp/physical therapist on Thursday. She did "body work" as she calls it on my hips, legs, feet, scar line, etc. using the myofascial techniques. They were never able to work directly on my scar line before because I had the problems with it not healing. It looks so much better now.

Some of it felt good and some of it didn't but I knew that meant things needed to be loosened up. I felt better yesterday than I've felt in 2 weeks. I'm still dealing with the arms and shoulder issues but have new exercises that I can do. I'm just not able right now to hold my arms above my head for very long at all.

On Tuesday I will be in the heated pool. I've been walking each day and trying to either go a little faster or a little longer. I can tell my lungs are still not that great but getting better.

I got knocked down but I'm coming back up with the gloves on. I feels so good to have a plan of action.

Love you all,
Vicky

[caya]

Hi Vicky,

Glad to hear you are feeling better. I have fibromyalgia, and the pain from that compounded with the aches and pains compliments of Femara have made me pretty miserable. I find that exercising in a warm pool really helps. Also taking a hot bath with Epsom salts or Dead Sea Salts is nice too.

Legionaire's Disease? Oy!! What next for us Her2+ gals (and guys)?... It's always something...

all the best
caya

[vlcarr]

Margie,

My tumor size is in my signature line along with the "rest of the story".

Just wanted to let everyone know that some things are better and some are not.......I'm still working with Mary Kay (therapist). We've gotten to be pretty close through all this and share a lot of personal information during my sessions. She's the best.

My leg & hip pain is better. On Friday I did a few of my exercises that require my hands be over my head. The very next day my arms and shoulders hurt so bad I could barely get my bra on. They even get cramps in them. I will discuss this with her at my session tomorrow. I have a pool session tomorrow.

My new thing is to wear my fake boob every day. Because my remaining breast is so heavy she said I was starting to lean a little to that side so that could be impacting my shoulders as well.

So, I've been wearing the darn thing even though I'm at home. I never wore a bra at home before cancer and I sure hate wearing one now, especially with the fake boob......Now that I'm doing that I've noticed swelling in my trunk as well.

I hate cancer. I wish I didn't have the other breast--at least I would be balanced. It's not that I have HUGE breasts it's just they are heavy ones........

Been a little down over all this but will keep on plugging along and keep the faith. More adjusting to my new normal.

I will finish herceptin on 06/24. I still seem to have no energy but have been walking every day. I try and go further and a little faster each time. It's been so terribly hot here. I can tell I'm still not fully recovered from the pneumonia.

Trying to be patient.....not my virtue but this cancer is bound and determined to beat me into submission.

Thank you all for your comments.

Much love,
Vicky