FYI

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24242
24242 Member Posts: 1,398
edited March 2014 in Breast Cancer #1
After still struggling with health issues for 3 years post treatment for my stage 3 breast cancer I started to really force the issue because one truly gets tired of being sick and tired. I was left to my GP except for yearly check up where I complained of the same things and little done.
Finally it was a matter of having to return to work because I was that ill I didn't work from surgery through 21 months. I was trying to return to modified duties since working heavy labor in paper mill. I lasted less than a year and off again struggling with all these painful issues. Finally demanded to go back to pain specialist and get at the heart of the problem since no anti depressant would work and that was all GP could think to give me since we are assumed to be anxious.
Well it took another 3 years to get at the layers of pain from all the diseases I was left to cope with but no one wanted to go there it seemed unless they had to. I guess they hoped I would just quit and go away. I was on amitriptoline, the nortryptoline alone with celbrex then something for headaches because migrains set in and I had never had one though my mother suffered terribly as did my sister. I actually went on METHADONE because I had all the side effects from the drugs and struggling it seemed more with them. I stayed on methadone for about 4 years but always felt like **** because it too was one of the side affects. I just couldn't get away from them since I was that sensative to everything going into me no wonder chemo was such a problem.
I had found out I had all these nerve and arthritic conditions that were causing me pain I had irritable bowel I had sleep disorders along with night sweats and much tingling and numbness in my hands along with much joint pain arthritic conditions to boot. Doctors then believed stress was a big problem and I might never work again and if I could probably part time would be good. I actually just heard recently that night sweats are a sign something is wrong. They are not the same as having a hot flash in bed. Then on the other hand I have melted in the heat as well starting with cancer too.
I worked shift work my whole life and worked in heavy lifting industries. I moved into the paper industry 6 months before my diagnosis moving away from family and friends to start a new life with my LOVER. WOW was something I said allot way back when.
Now 14 years after by BC struggle and probably had 5 years of relatively normal health for me that is. I had bouts of illness where I couldn't work riddled with pain in joints and all over everything was affected and headaches along with weakness and dizziness with lots of nausea and the leg dragging getting worse. No one has ever figured out what happens to me. I had another bout last winter through spring and this time lumps were an added variety to what I normally suffer. Still no closer to answers yet more pain added with the lump thing and I also found out I need surgery for bad shoulder that could be the root of problems the cancer ortho surgeon finally thought.
I don't believe that for a moment when the pain still radiates from the lumps and to say they couldn't hurt me is rediculous since nerves are everywhere. My mother is a nurse and has watched me all these years shuffle through the system that has little help it seems. She also had another friend an old classmate that was suffering in another province almost sounding like the same thing and she too has suffered more than 14 years. Fibro Myalgia is a disease that is very loosely used and almost for people that they can't give a true diagnosis.
Well her friend was recently diagnoses with disease that was founded in the late 1800's and obviously the doctors have forgotten about because after readying the information the only thing extra I have are dragging legs. I don't care if my doctor gets mad for bringing in this information because thank God for the internet and now maybe this too will be taken more seriously. I just don't want to wake up in another 20 years to hear had I gotten myself on some medication I could have stopped the progress or slowed it of some of my diseases. There are things out there that slow progression of many diseases down and maybe I should care more about that so I can continue to work and be productive.
Quality of my LIFE is the most important to me not so much the length.
The diseases name is DERCUMS Disease and all the symtoms I have but like I say add a few more including 2 dragging legs.
Hope this information will help someone out there because I feel hopeful for the first time in this past year dealing with these painful lumps and painful issues.
Tara
Mostely affects women over 40 and post meno which was triggered chemically or surgically which chemo did me in at 36. I could be looking at hot flashes till I'm 80 mother still having them.
Just look up the disease it totally amazed me.

Comments

  • Katz77
    Katz77 Member Posts: 598
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    wow
    Mmmm makes u think. Have had tendon and nerve issues for yrs. Now joints are being attacked. Will have to look it up. Hey ur moms a nurse, me too.
    Im not sure about this fibromyalgia though. They use antidressants for it. Lol Feel better. Katz
  • KathyLQ
    KathyLQ Member Posts: 100
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    Your comment "symptom of breast cancer was hip pain" ? ? ?
    Tara, it was a little hard to get through your long post, so I hope you don't mind that I suggest that you try to keep it shorter and perhaps to a narrower focus. I think that helps readers get what you're trying to say easier...

    What did catch my eye, was a comment in your profile:
    "AFTER researching this disease I found somewhere and read that a symptom of breast cancer was hip pain".

    I am very curious to know where you found that information or if there are others that report this.

    I've had hip pain on the side of my BC. Started right about the time I got my lumpectomy. I've had a bone scan since (came back clear), and I'm trying to find answers. Every Doc I've asked has shrugged their shoulders when I tell them this.
  • 24242
    24242 Member Posts: 1,398
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    KathyLQ said:

    Your comment "symptom of breast cancer was hip pain" ? ? ?
    Tara, it was a little hard to get through your long post, so I hope you don't mind that I suggest that you try to keep it shorter and perhaps to a narrower focus. I think that helps readers get what you're trying to say easier...

    What did catch my eye, was a comment in your profile:
    "AFTER researching this disease I found somewhere and read that a symptom of breast cancer was hip pain".

    I am very curious to know where you found that information or if there are others that report this.

    I've had hip pain on the side of my BC. Started right about the time I got my lumpectomy. I've had a bone scan since (came back clear), and I'm trying to find answers. Every Doc I've asked has shrugged their shoulders when I tell them this.

    Hip Pain
    Well I never did read it myself but a friend of mine who did allot of research had found this symptom documented in her search since she was suffering so much and not getting answers.
    My hip pain began probably 15 years prior to my diagnosis and I suffered with it constantly so was surprised/shocked to hear someone found this as a symptom for breast cancer. My friend researched her own treatment since the medical community was giving little hope once they did dx her with lumg, bone, and liver cancer after a few years of going to doctors.
    I do not have the answer of where she found it. I was intersted to know how many others have had such a symptom for their bc.
    Tara
  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
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    KathyLQ said:

    Your comment "symptom of breast cancer was hip pain" ? ? ?
    Tara, it was a little hard to get through your long post, so I hope you don't mind that I suggest that you try to keep it shorter and perhaps to a narrower focus. I think that helps readers get what you're trying to say easier...

    What did catch my eye, was a comment in your profile:
    "AFTER researching this disease I found somewhere and read that a symptom of breast cancer was hip pain".

    I am very curious to know where you found that information or if there are others that report this.

    I've had hip pain on the side of my BC. Started right about the time I got my lumpectomy. I've had a bone scan since (came back clear), and I'm trying to find answers. Every Doc I've asked has shrugged their shoulders when I tell them this.

    As a fellow long-post writer
    As a fellow long-post writer I don't think it was necessary to tell Tara she should keep her posts shorter.
  • KathyLQ
    KathyLQ Member Posts: 100
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    As a fellow long-post writer
    As a fellow long-post writer I don't think it was necessary to tell Tara she should keep her posts shorter.

    Heather
    The truth is, no one reads long unbroken posts. You can tell by the number of responses a post gets.
    I am encouraging her to format it differently, so that it attracts readers, and then it will get more responses.
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
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    thank you for sharing your
    thank you for sharing your story. so glad to hear that you are searching, being proactive and not letting drs dismiss you and not do their job to the fullest extent. sometimes may one thought leads to another and maybe they can figure what is wrong. i am not the type to critcize anyone on this website. i think we get enough of that in the world. i see this as a safe haven to vent, learn, support, cry, laugh, get mad, whatever we do on our journey through this. write you want! read what you want! but most of all, we should be as supportive of each other in our stresses. good luck to you and finding out what is wrong and help for it!