Discussion in 'Fibromyalgia Main Forum' started by Godismystrength, Oct 14, 2012.

  1. ... because I know what bad condition I'm in right now from my cfs and I also know that I will probably be dealing with a clueless doc... or worse, a cynical one after I tell him what I suffer with.

    I had to have a biopsy almost 4 weeks ago for a spot on my leg... which turned out to be squamous cell carcinoma. Now I have to get a surgery known as MOHS on Nov. 7th and have to go tomorrow for a consult with the surgeon. I am apprehensive to say the least.

    I'm really in no shape to even get there tomorrow because I'm so weak right now... but I know I have to try to get there. I'm also concerned about how long I will have to be on the table and in a strange position for the upcoming surgery (because the spot is on the inside, back of my thigh) which will seriously aggrivate my FM... and the only thing that usually helps me is hot soaks in epsom salts... haven't even been able to soak in a month because of how long its taking for the wound from the biopsy to heal. I can only imagine how long it will take for the wound to heal after surgery...

    I hate that I'm feeling so anxious... but I just can't take dealing with docs who know nothing of our DD, or don't even think it exists.... added to the effects of the surgery on my condition. I know I just need to pray... but would like to hear any advice you might have for me in this situation.... I will likely have fallout with both my FM and CFS/ME... I was already dealing with a flare in my condition... just SOOO not up to this...
  2. IanH

    IanH Active Member

    I had a squamous cell carcinoma on my nose several years ago. I got rid of it completely using flouro-uracil, applied three times daily until the signs of the carcinoma disappeared, then followed by saturated solution of ascorbic acid, applied three times daily for three months. When I went back to the plastic surgeon he was surprised but then said "sometimes these things disappear on their own".

    Flouro-uracil blocks DNA replication and proliferation of the cancer cells and is recommended by NZ and Aus. cancer clinics for a variety of non-melanoma skin cancers. I assume it is used in the US and Canada.

    If you have to have surgery then I wish you the best. I had surgery on my back with a general anaesthetic and had not problem with my ME/FM. If fact it subsided a bit. Yet when I got the flu it went mad.
  3. mbofov

    mbofov Active Member

    I too don't like going to conventional doctors who know nothing about CFS, or who don't even believe it's real. If I don't need to tell them (e.g., my eye doctor) about CFS, I don't. Likewise I generally don't tell people about it either, unless I really really trust them. Is it necessary to even tell the doctor who will do the surgery about your fibro or CFS? If not, I wouldn't talk about it. I hate the blank looks or what I say just being igored, which is all too often the usual response.

    I had plastic surgery on my chin almost 20 years ago for a basal cell carcinoma. It was outpatient and not too bad. They actually did a good job. I had the proverbial sore that wouldn't heal but didn't really pay attention to it (it was very small at first - it would bleed a little and then scab over, but kept doing that) and by the time I finally realized it was something that needed attention, I needed plastic surgery.

    I just read about mohs surgery, it's generally outpatient and sounds like it would actually be better than the traditional surgery because they can do a better job, and probably remove less tissue and also insure they get everything.

    When I'm dreading something that I can do nothing about, I do best when I can finally just accept it, accept I don't like it and am not looking forward to it, but that's too bad, and just accept that I have to do it and generally it's not as bad as I fear. The fear and anxiety are often worse than the event iself. And if I'm very tired (as I often am), that's part of it too, and I just have to accept that too (I know, easier said than done!)

    Do you take magnesium by the way? I've read it can help a lot with FM pain and energy. I don't have FM, "just" CFS.

    Good luck and take care -

  4. Ian, I've never heard of the flouro-uracil... but that is great info! Thanks so much! I will need to see if its even available over here. But since I had the spot on my leg so long before I even got it checked (almost a year) and because I've had 2 other cancers before (melanoma and thyroid), there is a risk that this thing has metasticized. I pray that's not the case! But I know my husband and family want this thing gone asap. I do too! But I will certainly look into the flouro-uracil... and thanks so much for your best wishes and encouragement, Ian!

    Mary, thanks for the encouragement as well! Unfortunately, I already had to mention to the nurse over the phone about my condition, because she asked me why I couldn't get there for a 7:30 appt. I just mentioned that I have a condition that makes it very difficult for me to get anywhere in the early morning... but then she asked what the condition was and I just said ME and asked if she'd ever heard of it.... she said she thought she had (yeah right).

    But I'm torn about explaining our condition. For years, I kept it "hidden" and never divulged it (which is a shame that we have to feel that way!) And part of me wants to keep doing that... but then the other part of me wants to educate people so our condition doesn't stay in the shadows and unknown. It's just so hard though, when I do explain and folks STILL don't get it! It is maddening! And cruel! We suffer enough without having the added burden of people doubting us and/or treating us like we're just nuts or hypochondriacs that just want attention.

    But I hope and pray that brighter days are just around the corner for those of us with CFS/ME... and that we will finally be treated as folks with a legitimate disease and that it will be as commonly understood (at least among docs and nurses) as diabetes or lupus or MS, etc... and FINALLY we won't have to fear going to a traditional doc when we have to... and HOPEFULLY (dare I say it?) we may even find a cure!

    Thanks for the great advice Mary and Ian!


    [This Message was Edited on 10/14/2012]
  5. TigerLilea

    TigerLilea Active Member

    Sorry that you are going through cancer right now. I would NOT mention the CFS or FM to the surgeon. It's not going to make any difference to how they do the procedure, and you won't have the worry of them treating you like you are a nut case. I had a doctor years ago who told me not to mention CFS to specialists if I wanted to be taken seriously. Good luck with your surgery!
  6. I appreciate your input and kind wishes... My surgery is scheduled for Nov. 7th. Unfortunately I was unable to make it to my appt for the consult on Monday because I was wiped out from my youngest daughter's visit. Had to reschedule the appt for the consult.

    Also, unfortunately I had already sent in the paperwork where I had listed my current conditions... thought they might need to know for anesthesia purposes. Now I wish I hadn't listed it. I'm praying by some miracle that this surgeon will be the one in a million docs who have some knowledge of this disease. But just in case, I'm bringing with me a copy of 2 letters that I got from the Pheonix Rising Board... one is from Dr. Cheney and one is from Dr. Lapp. They recommend ME/CFS patients take these with us which explains a bit about our disease and which drugs should be avoided for surgeries or procedures. So hopefully that will help them take my condition seriously. One can only hope...

    Any and all prayers are appreciated! Thanks so much!

    [This Message was Edited on 10/18/2012]
  7. Mikie

    Mikie Moderator

    I am very sorry for all you are going through. One thing I have learned is not to hide my illnesses from anyone. If someone doesn't believe in it; that's their problem. When it's a doc, it usually doesn't affect treatment when it's not related to my CFIDS/ME nor FMS. Specialists are usually only interested in a narrow part of our health care. Of course, everything affects us and can cause relapses but when it comes to something like cancer, we may have to just bite the bullet and get it taken care of.

    Cancelling appts. may just reaffirm to a doc that we are not serious and are wasting his or her time. If I have an appt., I will rest the day before to make sure I can get to the doc. I don't let anything, or anyone, tire me out. In the end, missing appts. just prolongs the problem. Obviously, if I catch a virus or get sick, I cancel but I will do everything in my power not to miss an appt. I've worked in a clinic and I know how docs feel about missed appts. I also know how unpredictible our illnesses can be and, sometimes, it's unavoidable but making sure we are rested can often get us to where we need to be.

    Good luck to you with the procedure. Prayers going up.

    Love, Mikie
  8. zenouchy

    zenouchy Member

    Wish I had advice or words of wisdom. Please know your are in my thoughts and prayers for complete healing and well-being. Love, Erika
  9. I appreciate your prayers and warm wishes. Believe me, I HATE it when I have to reschedule an appt. It weighs very heavy on me... I used to be so very reliable before I reached this level of disability with this DD.

    Two or three years ago I could rest for just a day before an appt or anything else I was planning to go to and that did the trick. How I wish I could get back to that!! But this DD has progressed to the point that I am rarely able to get out of the house. And if I'm up and functioning for a day (or part of a day even), it will take more like 4 days for me to recupe. I'm not completely bed bound, but am concerned that this disease is moving in that direction... scares me to death.

    This past weekend, my youngest daughter was home from college for a short fall break (she had gotten home last Wednesday). It was her 21st birthday, so I wanted to be sure to celebrate it somehow (although I can't make the big dinner and homemade cake anymore like I used to so enjoy doing). Now its store-bought cake and going out to dinner or bringing food in... but I pushed my body to be able to spend time with her and paid the consequences. I do not regret doing so, however. My time with my kids is very few and far between now that they are grown and one away at college and 2 living very far away on opposite ends of the globe now. Just so happens that their visits have come in clusters lately due to circumstances beyond their control (my son being close to home temporarily for an 8 week course with the air force and my daughter, who is in England now, had a free pass to fly home about 3 weeks ago and had to take it then or she wouldn't get to come home again for a long time). It never seems to fail... I don't know why everything has to happen in clusters like this in my life.... just makes things so much harder!

    Hopefully, I won't have to reschedule again.... But guess what... my son will be home THIS weekend. He hasn't been home in a couple of weekends and will be flying back to Hawaii where he's stationed in 18 days though. Prayers definitely needed. Thanks Mikie!

  10. Sorry that I'm just now seeing your response! I do so appreciate your kind wishes and prayers! Thank you so much, Erika! God bless you!

  11. Mikie

    Mikie Moderator

    Sorry, didn't mean to sound judgemental. I totally understand how our bone-crushing exhaustion affects us but, unfortunately, those in the docs' offices don't. All they are concerned with is scheduling and keeping up with meeting their overhead expenses. Yes, no matter how sick we are, family comes first, as it should. We are especially lucky if our family members are understanding of our illnesses. I think that even if it makes us exhausted, having good relationships with our families is healing in the long run.

    Again, prayers for your healing.

    Love, Mikie
  12. Sorry I haven't been able to post for a few days... been having a horrible flare and not doing well at all (trouble breathing along with extreme weakness... not able to move... and nausea, etc)... But I just wanted to let you know that I do appreciate your response and warm wishes and prayers for healing. Some days, like yesterday and today, I feel like I'm barely here and don't know if I can keep fighting this disease... esp when I'm so weak that I'm struggling to just keep breathing... At least I'm getting a little strength back now... thank God!

    But thanks again, Mikie, for your kind response. Hope you are doing better these days!

    Blessings and Gentle Hugs,

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