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Post Mastectomy Pain Syndrome (PMPS)

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  • hipchik47
    hipchik47 Member Posts: 113
    edited March 2010
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    Hey Foggie, Hope the tulips will be blooming for u soon up there in snow country!!!!!  What article are u talking about in JAMA?  I posted an article on this tread from JAMA, so I am curious to know what article u r talking about.  I had my Dr email it to me and my son in law did the magic to get it posted on this thread.  My breast surgeon was one of the drs who wrote the article so she must have had it in her computer. 

      Welcome kristen.  I, and many others on this thread, have been to PT.  PT is a must right after surgery to get your range of motion going and to prevent frozen shoulder.  I went to PT after my bmx and have no problem with those things.  I am at my 3rd pain specialist and he said no physical therapy will help what pain I have because it is nerve related.   He gave me pain meds (which I was glad to get  cuz no dr wants to give pain meds) and an antidepressant to take at night for sleep. 

  • jean13
    jean13 Member Posts: 7
    edited March 2010
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    FYI, the JAMA article is from Nov 2009.  The article was a study done in Denmark about the prevalence of PMPS.  Unfortunately most docs here in US are still unaware of this condition. The article did not give any treatment options for women suffering from this condition :(

    Robin, I'm glad you are not experiencing PMPS.  Most women I talk to don't really know what we are feeling.  I appreciate your caring.  You are going to love, love, love the retreat and Pam and the gals.  Best weekend I've had in forever despite the terrible pain I was in.  I can't believe we were at the same fashion show and didn't know it.  Do you live/work in New Albany?  Keep in touch.

    Pain is very bad tonight.  Have to work tomorrow at 6:30 a.m. so off to bed for me.  Thank goodness for the Ambein.  Take care everyone. 

  • fogandroses
    fogandroses Member Posts: 130
    edited March 2010
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    Hippy - we thought spring had sprung and then the temps fell into the teens at night and 30's during the day. Brrr...it's such a damp cold. I bet the weather is perfect in Florida right now. Can we all come down and go for a swim? Maybe I could share some of my water aerobic moves!  It's awesome that you did that RV trip. You are a strong woman.Vegas will NOT be the same after October. I'm pretty sure I won't make the reunion but will live vicariously. So you'll have to share pics and stories.

    Kristen - I'm going to try and post the pdf you gave me. Not sure if it's possible so I'll do it separately from this post. Like I emailed you, it's so necessary to get this information out to women before surgery so they have a post op plan. Thank you for sharing it!

    That reminds me that one of my daughter's friend's mother told her that she had a cancer that affected her lung capacity (sorry I don't know what exactly she had) and she went through a rehab program for cardiac patients. It was the only rehab program at the hospital so they let her do it. She actually works with breast cancer patients at that hospital now and she had a light bulb moment when my daughter told her about PMPS. She asked why breast cancer patients don't have a rehab program like cardiac patients? PT, exercise, diet etc. Wouldn't that make sense?

    Have a good Sunday, everyone. With Love, Fog

  • fogandroses
    fogandroses Member Posts: 130
    edited March 2010
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    This is the handout Kristen mentioned above, minus the lovely graphics and colors. Thank you Kristen!

    Breast Surgery Rehabilitation

    Early Intervention

    Rehabilitation for Breast Cancer can and should begin before the surgery itself.
    Prior to breast surgery, patients benefit from a pre-surgical baseline evaluation. This
    allows the therapist to assess original levels of function and prepares the patient for the
    rehabilitation process including appropriate immediate post-surgical exercises.

    Pre-surgical therapy allows the patient to establish a comfortable communication line
    between patient, doctor and therapist. Provides patient with information on what
    to expect post-operatively regarding functional activity, wound care and pain levels.

    Post Surgery

    Women do not have to live with the long term discomfort associated with breast surgery.

    Post operative care by an oncology physical therapist specialist can increase function,reduce pain, and improve quality of life.

    Our soft tissue program focuses on areas often overlooked such as breathing difficulties,
    numbness, asymetry, chest wall pain, tightness or stiffness, implant mobility and scar tissue.

    Encourages patients to develop comfort and confidence in their "new " self.

    Enhances the cosmetic appearance of the surgery results. Individualized program developed by our oncology physical therapy specialists with real life experience.


    Instruction in proper posture and relaxation techniques
    Gentle stretching
    Active assisted motion
    Range of motion exercises
    Myofascial release & scar tissue and implant mobilization
    Design of an individualized home exercise program
    Wound and skin care management
    Desensitization techniques
    Abdominal exercise for reconstructive surgery patients
    Education and prevention of lymphedema (includes skin care, the avoidance of strain, the reduction of fluids, improving
    the skin's elasticity, reducing the risk of inflammation)
    Continued communication with the referring physician.
    Measurable outcomes of improved breathing, implant mobility and symmetry.
    For more information visit www.mlcpt.com or call 637-4747

  • GointoCarolina
    GointoCarolina Member Posts: 95
    edited March 2010
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    Oh,I just found this thread and Kristen I had my mastectomy in Syracuse! Can you give me more info on your physical therapist? Mine is great and I know he would be willing to be in touch with yours for ideas to help me.Or I am willing to travel for help.Thank you so much.I am so glad I found this!!!

  • KristenPink
    KristenPink Member Posts: 79
    edited March 2010
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    pandazankar

    First of all lets all thank FOg for taking the time to type out exactely what my hand out said! Kudos to you !

    My physical therapists name is Kristin Matthys and she is at Mary Lou Corcoran's office.  Mary Lou is a BC survivor and has just gone through it in the past 6 monthes.  There is another therapist there that is a very recent BC survivor.  Here is a link to thier website. 

    http://www.mlcpt.com/staff.html

     Kristin (my PT) also told me a phone message that she and another PT are working on an article aimed at getting the word out about the need for PT through out the process of BC surgery of all kinds and decisions.  I will see her in person soon (as soon as I get my mew script from my PS on Monday) so I will ask her about that and when and where that article will appear. 

    I experienced crazy weird pain for 6 weeks after double MX and TE placement.  Then I started to move more and ot the PT script and it got better fast.  I am now 4 weeks post-silicone exchange.  I do not have much pain in my chest but am dealing with the tightness and hardness of what feels like the TEs again.  I feel a little guilty being on this forum as you all are going through such awful pain right now.  But whippetmom over at xchange city said this info would be good to share. 

    Kristen

  • kcshreve
    kcshreve Member Posts: 349
    edited March 2010
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    Fog- I'm glad someone's up on this. Before I went into bmx surgery, I called 2 different prominent breast surgeons in Dallas, asking for pre-care with a PT.  Neither office could refer me, or give me any idea who to suggest. Both offices told me they don't use PT's.  Unimaginable!  We are definitely behind the curve here in many ways.  I've developed some lymphedema, and found a therapist on my own.  Neither of these offices could help me nor did my own family doctor or oncologist. Can you believe it?.....I shouldn't ask that.  Of course, we can believe it.

  • Angel40
    Angel40 Member Posts: 47
    edited March 2010
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    Rose, and HI to ALL,

    Sorry Rose, I was busy chatting on facebook about Fibromyalgia to get some knowledge and talk to people with their experiences. Obsiously it's a nice support group (National Fibromyalgia Association) but each person is different and react different with the medications. I ONLY stayed for a week with Cymbalta. My pain was gone but I cannot function at work. Headaches everyday, can't sleep at night and the loss of appetite. I stopped the cymbalta and taking (Ultram) tramadol at night. It just help me to function, but the pain is tolerable.  I had a bad day Monday and I called in sick, took percocet, slept the whole day and then I was good again. Today, I have moderate pain. I will start physical therapy for my legs this afternoon. Twice a week for 4 weeks. The good part of this therapy is land therapy(regular) and Water therapy(pool).  I really hope Rose that you could get the right medication/treatment for your pain. I know this tramadol is not the only medicine for my fibro so my next rheumatologist Appt. is on May 5.

    take care

    Edith

  • rose847
    rose847 Member Posts: 18
    edited April 2010
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    Angel, I am still hangin in with the Cymbalta and Ultram. I cannot take either of them after 4pm or they keep me up all night. So my evenings are very painful.

    Fog, I live in the Chicago area and I did go to a rehab orientation at the Rehabilitation Institute of Chicago. Well, after 5 hrs and their getting my hopes way up that their program was for me and would help, I found out that it cost $35,000.00 after insurance reimb. Who can afford that? The cost was for 1 month, 5 days a week. I was very disappointed.

  • Estepp
    Estepp Member Posts: 2,966
    edited April 2010
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    Edith... sweet sister.. I am very pleased the Ultram is helping you get relief some of the time.

    Ladies with Fibro do to the nerve damage associated with lymph node removal and Mastectomies:

    Have you tried a cocktail of Flexural and Ultram? I take them BOTH at bedtime. I take Ultram only during the day. I admit, I can still feel ALL 18 pressure points, ALL THE TIME. I am aware. But the actual PAIN in these 18 hot spots is a level 2-3. I personally can deal with this. I was a pain level of 6-7 all the time.. 24/7...... soooooooooo a 2/3 is like the common headache to me. Think about this cocktail for yourself.

    These two drugs do not have the SE. And the Ultram is NOT a controlled substance and addictive.

  • Angel40
    Angel40 Member Posts: 47
    edited April 2010
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    Laura, I will ask the doctor about flexeril. I started the physical therapy and after each therapy It's really painful that  I need more than Ultram.

    Thanks

    Edith

  • Tinkerbell99
    Tinkerbell99 Member Posts: 193
    edited April 2010
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    Hi everyone!!

    Ok now that i PM some of u... i hope, i can update pubically!!! i am better then i was a month ago thanks to time, going back to work & mainly medication. I am seeing a great Pain dr & he really understands my pain ....he is giving me stronger medication & is very kind. I wish more women that had pain like i do can see someone like him.  He doesnt ask for urine tests (even though i'd have no problems w/ that) he doesnt want to subject me to 20 million tests which most of them want to...i am very lucky.

     now that things r calmer, i can expalin more abt my pain. 1rst the left side shifted a lot..we dont understand why, but supposedly it is not a big deal to fix. If it wasnt for all the problems i have had it would of been fixed a while ago.  My cleavage area is a BIG space ...& the BS took all my breast tissue out ( i guess u have breast tissue there too) & now i have skin rubbing against bone & this appears (which i have complained abt since day 1) to be my issues. So when i have my revison surgery my dr is going to get fat cells from my belly using a small needle & insert it into that area.  he can even do this in the office, but he feels since he is going to over fill me in the begining, it will be best to do this when we have the revison surgery. Many times he uses this for more cosmetic purposes then for medical purposes.  He tried to make me feel good by telling me if this works, he is going to write up an article abt this & have it published.  Hey if this helps me, maybe it can help other women too. My implants itself dont hurt.  i do have some swelling on the rt side, but that is more from my shoulder blade when it acts up , it effects my breast. When i tried PT for my shoulder blade, it made my breast unbearable & i had to take my medicine every 4 hrs!! i was seeing stars.

    I am back to work f/t b/c emotionally its the best, physcially it is very hard!!! Now my boss has increased my hrs 3 days a week for a 1/2 hr b/c we have more kids in the after school program. 1rst i am the only head teacher that has to work the after school program & 2nd she doesnt understand as the day goes on it gets harder & harder...many ppl think that b/c ur back to wk, ur fine...i am far from fine.my boss said come in a 1/2 hr later & that doesnt work either, b/c earlier in the day its easier, as the day goes on it gets harder. I wish ppl would understand this..& then i get thrown in my face that i got pd through out my time off. I am thankful for that...but i didnt ask to be pd & that was ur nice choice to pay me, but DONT throw it in my face!!! I hate a "gift horse gift"...

    i started to wear a bra for a short period of time & was so happy to take it off too!! But when i have my revison surgery i have to wear support, so i am trying to get used to wearing 1. Plus it does look a lot better!! I am a "B" cup now, so i was happy abt that.  when i look down @ my feet i c my feet!!! I know so many woman want to be bigger..i never wanted to..i always wanted to be small. I havent been a "B" since elementary school!!! lol

    I HOPE everyone is enjoying their holidays (if u celebrate holidays) ..this is another pet peeve of mine..that in stores & even dr's why do they automatically wish u a happy easter? Many ppl dont celebrate Easter...how abt have a nice day or good wkend..leave out the holidays ...or just say happy holidays!!lol

    take care all!! hugs!!

  • Tinkerbell99
    Tinkerbell99 Member Posts: 193
    edited April 2010
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    Hi ladies,

    so b4 i have my revison surgery i want the bestest of the articles to send to my Dr & send & give to other DR's about post pain. I know i have read a few..but can anyone want to stay overnight. suggest some that is hould send & give to my dr's.

    I also want to show my dr the anesthia article & how that has helped women have less pain...i told him i want it in the hospital (the surgery ) & i want to stay at leaST overnite & i want him to have the pain mang dr/nurses there on my case right AWAY!! This time i will be prepared!!!

    now i have been on robaxin & i dont feel much of a difference, does anyonehere know if flexeral is better? I also mentioned a whil back abt the anti inflamatory patch ...someone here said they uded it..do u know the name of the patch u  used? I am having trouble w/ my insurance comapany getting a pre authorization ..

    hugs to all!!

  • whippetmom
    whippetmom Member Posts: 6,028
    edited April 2010
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    FOR LYMPHADEMA SUFFERERS:

    Have you heard of a procedure called "Lymphovenous Bypass"?  I was doing my regular research into plastic surgeons and found this reference to Dr. Lisa Jacob in New Jersey:

    "With her microvascular experience, Dr. Jacob is able to offer a new surgical technique in the treatment of lymphedema. This minimal invasive procedure called Lymphovenous Bypass attempts to reroute blocked lymphatics into the venous system and reduce the symptoms of Lymphedema."

    Please cross-post if desired....

     

  • makingway
    makingway Member Posts: 465
    edited April 2010
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    Copy the article

    Left Click in the reply box

    Next: Using your keyboard, hold the Ctrl key down and hit V

    A pop-up window appears

    Left Click in it

    Again hold down the Ctrl key and hit V 

    Then: Click the Insert button on the bottom of the window

  • fogandroses
    fogandroses Member Posts: 130
    edited April 2010
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    My sisters - I'm just popping in to see how you're doing. Today I asked the guys in Boston for an update on the PMPS article and they said they're working on it. Hmmmm....I don't like the sound of that!  But I'm trying to keep a hopeful attitude.

    Much love to you all. Fog

  • Marg33
    Marg33 Member Posts: 1
    edited April 2010
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    Man, my oncologist immediately set my surgery date, and her staff set up several appts. with the hospital staff, hubby and I went to all these appts, before surgery, we had a 5 hr. session on pre-op and they gave us brochures and papers about what to expect, what could happen and if it did, what to do. The exercises post-op. They set up nurses to come to my home and change my dressings and check out my incision for a few days after. They set up PT for me in our local hospital. When all these things were done, I had my surgery yesterday, and came home this morning. My surgeon gave me pain meds. I don't have any pain, but she said, sometimes you feel pain in a few days, feels more like bruising and not to suffer, take the meds. I'm to call her if I have and questions or concerns.......as if I could after all that pre stuff.  They were wonderful

  • Estepp
    Estepp Member Posts: 2,966
    edited April 2010
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    You know what is SO odd to me.

    My pain is down to a 2 daily.. THAT makes me happy...:)...

    the odd part is.. my armpit still just burns when I stretch it. It feels like... well.... ok.. picture this:

    You lay out in the sun: arms above head. Armpit get massive burn. A few days go by and you have forgotten to put lotion on the armpit. Then you raise your hand about your head and stretch... the armpit feels like ti is pulling and tearing the skin and it burns.

    Anyone feel this? I had all nodes removed, bi-lat mast, and 36 rads...

  • Deeds
    Deeds Member Posts: 43
    edited April 2010
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    Estepp - yes, that was my original description in a nutshell. Good simile of the sunburn...

    Mine was gone after two acupuncture treatments. HOWEVER:  The cyst that developed under my arm as the probable result of a needle dragging some surface bacteria into that area has been another journey. It was removed today (under general anesthesia) , and seems to be a simple sebaceous cyst. Because it was so close to my implant it could have posed a problem, but so far is OK. If an acupuncturist could have addressed my armpit pain with needles down the arm only I'd have avoided the complication. 

    Glad you're down to a 2 daily, though. That's such progress, and is a great encouragement to many of us!

  • Estepp
    Estepp Member Posts: 2,966
    edited April 2010
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    DEEDS.... this is something to look into:

    I had.. Mast.. .. ALL nodes removed.... TE.... rads... Implants:

    You: Mast..... TE..... Implants....

    Yet we both had the same pains. WOW

    I was TOLD the removal of all the nodes and rads on top of this.. cause my nerve damage and pain... ( fibro)

    You did NOT have the rads nor the node removal. and had the same pain in the armpit area.

    HMMMMMMMMMMMMMMM

    Sisters....

    Will they every be able to say WHY..... WHY we get the pain we get that is the SAME , yet we ALL are so unique in our cancer treatment.?????????????????

  • Deeds
    Deeds Member Posts: 43
    edited April 2010
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    And mine are sub-muscular - beneath the pectorals, which supposedly accounts for more tightness, but certainly not the cause of armpit/radiating arm pain.

    Unique. I guess we are,after all!

  • fogandroses
    fogandroses Member Posts: 130
    edited April 2010
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    Laura - I'm so happy to hear your pain level was a two. Do you find when your pain is low you do more and then find yourself in more pain? I went through that cycle for a couple of months before my pain level stayed down and now...I almost don't dare say it...I am pretty much pain free!!!!! And I am not taking any pain medication. Saying this out loud makes me get teary. I also have a feeling that my pain, especially nerve pain, is somehow related to my menstrual cycle. I had a hyst. but kept my ovaries so I don't know exactly where I am in my cycle but seem to have more numbness and tingling in my left arm/hand on a monthly cycle. Do you think this is related to hormones somehow? I asked my acupuncturist and she said the tingling is caused by less circulation which is effected by hormones. So maybe..I just didn't think I would reach this point in healing - ever. It took almost two years and starting in January doing acupuncture, reiki, water aerobics and massage. Now I am getting stronger and sleeping better - which reinforces the healing. 

    Deeds - I didn't have nodes or radiation on my left side and that's where the PMPS developed. After reading so many of our stories it seems to me that the pain is caused by the breast surgery itself. The Boston doc told me lumpectomy carries the same risk of PMPS as mastectomy...

    Marg - where did you have your surgery? Sounds like your hospital is a great role model for others.

    Hipp - how are you? What's happening? Freebird - if you're still reading I'm sending you a hug. Love to all, Fog in the city of light

  • hipchik47
    hipchik47 Member Posts: 113
    edited April 2010
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    Hey Foggie.......April in Parissssssssssssssssssss..Are u a museum goer??  Are u interrested in cemeteries?  Did u know Jim Morrison is buried in that famous cemetery in Paris?  I always wanted to go there, so if u go, say hi to Jim 4 me.  Wish I was there, love Hip

  • fogandroses
    fogandroses Member Posts: 130
    edited April 2010
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    Hipp -I wish you were here, too.  I can tell we would have a good time! We did go to Jim's grave. It wasn't easy to find but I love wondering around the Pere Lachaise cemetary anyway.I studied here years ago and used to wander around thinking deep thoughts there.

    Guess what I just did? I got up my courage and called a swimming pool to get details and I'm going swimming tomorrow. Yahoo! My French is okay until I get into a situation I'm not familiar with and my vocab is non-existant. Makes for funny conversations.Did you know that a swimming cap is a bonnet and a towel is a serviette? Well, now you do because you never know when you might want to go swimming in France. 

    I love the Musee d'Orsay but the Louvre is too much for me. We like to stand outside and look at the pyramid and then go drink champagne on the terrace at the Cafe Marly.Not very cultured I guess. Hope you are feeling better and things are going well with that new doc. Love, Fog

  • rose847
    rose847 Member Posts: 18
    edited April 2010
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    Hi Gals,

    I am FINALLY getting some pain relief after an entire month on Ultram and Cymbalta. They wire me so I have to take Ambien at night to sleep. I am SO THANKFUL that after almost 7 months the pain level has gone down. I am in about the 4-5 range. I was actually able to go shopping yesterday. I'm scared it will go back up and still limit everything I do to an hour or so. They now want me back in PT. I am not going to go for a few weeks. Again, knowing that PT is painful, don't want to go yet.

    Discussions about pain yet everyone with different cancer treatments. Well, I did not have any chemo(chose not to) and I developed neuropathy issues! Noone can explain it. It usually occurs as a result of chemo but not having gone that route, I have asked every Dr. why. No answers.  Medication has made it better but some days are tough. 

    Hope everyone has a good week.

    Rose

  • hipchik47
    hipchik47 Member Posts: 113
    edited April 2010
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    Rose, I went to PT 3 times.  The first was a few months after surgery.  It helped with my range of motion but did nothing for my chest pain.  The other 2 times I went to PT all it did was make the pain worse.  My new pain dr said no PT will help the pain from this disorder.  That made me feel good because I knew I was not improving with PT and did not want to continue.  I will not go back to PT again

       I had fibromyalgia diagnosed post mx, but I knew I had it for years.  I also  have neropathy in my feet and knees. Supposidly if u have fibro, u might be at risk for PMPS.  I don't know if thats true or not.  Noone has explained anything much to me. Thats what this thread is all about, Why no answers??

      I am glad u are feeling better with new pills....yes some days are tough, but Im glad I have some good ones!!!!

  • hipchik47
    hipchik47 Member Posts: 113
    edited April 2010
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    Hey Foggy, just watched Julie&Julia and thought of u eating all that Fab food in France.  Hip

  • fogandroses
    fogandroses Member Posts: 130
    edited April 2010
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    Hippy - that is a great movie. I didn't really lilke the book so it was a nice surprise. We are staying just off rue de l'Universite where Julia lived. We are eating very well, too! This morning we walked the Promenade Plantee (did you see Before Sunset with Ethan Hawke and Julia Delpy?). It was around 70 degrees - just gorgeous weather. No sign of any ash cloud that's for sure. Then we had a two hour lunch at Les Deux Magots. Heavenly. I really hope wine is good for me. Actually, I know it is good for me right now. We are walking everywhere holding hands, soaking up as much as possible...of the city, not the wine  :)

    Two days ago I started to develop truncal cording again (this would be # 3) but it went away. I am very grateful. It was painful and a reminder of what I wanted to leave behind.  Love to all, Fog

  • fogandroses
    fogandroses Member Posts: 130
    edited April 2010
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    Rose - I'm so happy for you. I hope with more time your pain level will go down even further. You're in my thoughts...Love, Fog

  • Angel40
    Angel40 Member Posts: 47
    edited April 2010
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    Rose,

    This is my 3rd week for twice a week physical therapy for 4 weeks. One day it is regular therapy, the next day will be water therapy. 94 degree warm pool water then the PT tells me what to do in the water. I loved the water therapy, it did helped me a lot with my pain, soreness, muscle.

    I'm the same boat as you, No chemo but got all the body aches. the Rheumatologist said it is Fibromyalgia just March 9,2010. So far I'm tolerating and managing the flares.