Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 25

Thread: Conflicting Doctors

  1. #11
    Join Date
    Nov 2011
    Location
    Leahi, Hawaii
    Posts
    70
    Thanks
    33
    Thanked 15 Times in 13 Posts

    Default

    Hi Hunniebun,

    You were very helpful! Thank you! I really do appreciate it! Talking with everyone is making this whole process a lot easier and makes getting answers a lot easier as well.

    Wow, thank you for sharing what you're going through. Once I get to see my GP, I'll let him know about the back pain and see what's his plan. I was feeling my back last night and can feel a bit of a bulge in the area where it hurts. Not sure what's going on - if it's from when I pulled my back or from an injury I had in high school.

    I have almost the same problems as you do. My hands, wrists, elbows, shoulders, neck, knees, ankles and feet joint wise and all muscles as well. I also have headaches/migraines, chronic fatigue, the rash on my face which gets worse if I'm in the sun (it's a little hard to avoid it considering where I live), dizziness, nausea, difficulty breathing, chest pains, trouble sleeping/staying asleep, the skin burning feeling, numbness in a few of my toes, anxiety, brain fog, dry eyes/mouth and the overall flu feeling. I sometimes feel like I'm comepletely crazy when I look at my list of symptoms. Thankfully my doctor listened and didn't brush me off like all of the other doctors. For those days when the pain is so bad that I have a hard time walking, I've been considering getting a cane. I think we have one my grandma used, so I might take it.

    I'm hoping my doctor doesn't put me back on prednisone. You're not the first person to mention how bad the side effects are. I looked up the side effects and have to agree it's a love/hate medication. I love what it did, but I hate that it could cause more damage than what these disorders are already doing.

    The only difference I notice after exercising is that I sleep a little better at night. The pain is still there, but having that extra rest makes a difference for the next day.

    I'm glad my GP understands me too. I don't know how I could manage everything without help.

    Thank you again! Your advice and sharing your experience has helped tremendously!

    Blessings, Love & Aloha,
    Ty
    "Kindness is just love with its work boots on"...

    "No man stands so tall as when he stoops to help a child." Abraham Lincoln

  2. #12
    Join Date
    Aug 2011
    Location
    Rockingham, Perth Western Australia
    Posts
    273
    Thanks
    139
    Thanked 48 Times in 41 Posts

    Default

    Re massage I bought a seat insert I think it is the inners of the big massage chairs but instead on 3,500 for the chair it was only200 for this back and seat that give massage all over and it is wonderful!
    Desley
    For every dark cloud there is a silver lining!
    Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

  3. The Following User Says Thank You to Desleywr For This Useful Post:

    NaturalMystic (01-07-2012)

  4. #13
    Join Date
    Dec 2011
    Location
    Crowley, TX
    Posts
    33
    Thanks
    34
    Thanked 15 Times in 9 Posts

    Default

    When I moved to my current home from the Houston/Galveston area (where I was received FABULOUS care from my pcp and rheumy), I was at a loss as to what to do. I found a rheumatologist who was exactly as you described, and even arrogantly questioned, "who TOLD you you have Lupus?"...even though all my records clearly showed that I was being treated by a rheumatologist and that I met almost all of the 11 criteria. I felt humiliated and began to doubt my own experiences, and swore I would never go to a doc like that again. Thank the Lord, I found a wonderful pcp in a very small town that literally saved my life when I went through a horrible flare that made me bed ridden for a year. From the beginning, he reviewed my medical records thoroughly (and that file is THICK, believe me!), called my former doc and rheumy to consult with them on treatment options, and from then on he has continued to listen to me, caring for me with compassion and kindness.

    My Lupus is very complicated, with multiple overlap conditions (too many to list here) ranging from Myasthenia Gravis and Polymyositis to raynaud's and Restless Leg Syndrome. While many Lupus patients have problems with weight gain, I can't keep weight on during flares...even today I only weigh in at 90 lbs. I have a vast history of symptoms - unexplained fevers, recurrent pneumonia, pleurisy, profound muscle weakness and degeneration (have even had to learn how to walk again), alopecia (hair loss), joint pain and swelling, avascular necrosis...the list goes on and on.

    I said all that to say that we are all INDIVIDUALS and a good doc will treat your condition, knowing it is specific to YOU. There are lab tests that are run, with a list of 11 criteria, 4 of which you must fulfill to receive a diagnosis of SLE. You are partially right in that lab tests do not necessarily "seal the deal" in whether or not you have Lupus. You can have 4 of the 11 criteria and a negative ANA and still have Lupus. I have never seen it stated anywhere in my research that any of the lab tests are "100% positive in Lupus patients". I know a lady that has suffered greatly with Lupus and has never had a positive ANA. But she has fulfilled 4 of the 11 criteria so her diagnosis stands.

    I apologize for the length of this message and my rambling on. This is a very important and emotional subject for me because I feel that too many of us are thrown to the side because we "don't look sick", until so much damage is done on the inside that treatment is difficult and complicated. I feel like we have an "orphan" disease...not enough research, no "race for the cure", no big push for answers. Until there are more answers, we will still continue to have to see doctors that treat us like we are nut cases.

    Okay...I'm done now.
    May today bring you joy, freedom from pain, and abundance of blessings!

    Kathie Lea

    “If the Lord be with us, we have no cause of fear. His eye is upon us, His arm over us, His ear open to our prayer--His grace sufficient, His promises unchangeable.”~John Newton (1725 - 1807)~


  5. The Following 4 Users Say Thank You to chinadoll For This Useful Post:

    Desleywr (01-08-2012), magistramarla (01-07-2012), NaturalMystic (01-07-2012), steve.b (01-07-2012)

  6. #14
    Join Date
    Mar 2009
    Location
    Dallas, Tx
    Posts
    1,862
    Thanks
    145
    Thanked 413 Times in 339 Posts

    Default

    Quote Originally Posted by magistramarla View Post
    Ty,
    Massage and physical therapy both help. My masseuse is a wonder. She massages me all over my body - even my hands and fingers, and I walk out of there feeling better for a while. Massaging and stretching are very good things to do!
    Hugs,
    Marla
    I can't stand massages, it hurts so much, that I cry out in pain. I have alot of muscle, skin, bone,spine and joint problems. My skin hurts badly, when I dry myself off, after a shower.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

  7. #15
    Join Date
    Dec 2011
    Location
    Crowley, TX
    Posts
    33
    Thanks
    34
    Thanked 15 Times in 9 Posts

    Default

    Debbie,

    I know what you mean! I too have painful joints and muscles, and hyperesthesia of the skin. So much so in fact, it hurts to be touched. So utilizing the skills of someone that is familiar with inflammatory diseases is a must for me and, I would think, anyone that has this problem. You have to be careful with massages because (according to my physical therapist) there is a fine line between what is therapeutic and what is inflammatory. You might want to get your doc to prescribe physical therapy, and the therapist will give you just the right kind of massage that you need.
    May today bring you joy, freedom from pain, and abundance of blessings!

    Kathie Lea

    “If the Lord be with us, we have no cause of fear. His eye is upon us, His arm over us, His ear open to our prayer--His grace sufficient, His promises unchangeable.”~John Newton (1725 - 1807)~


  8. #16
    Join Date
    Nov 2011
    Location
    Leahi, Hawaii
    Posts
    70
    Thanks
    33
    Thanked 15 Times in 13 Posts

    Default

    Hi Desley!

    Great idea! Thank you for sharing!

    We have one of those, but the things inside that do the massaging are horrible! They make my back hurt even more. I guess I'll have to go get a different one and test it before I buy it.

    Thanks again!

    Blessings, love & aloha,
    Ty
    "Kindness is just love with its work boots on"...

    "No man stands so tall as when he stoops to help a child." Abraham Lincoln

  9. #17
    Join Date
    May 2007
    Location
    Seaside, Ca.
    Posts
    3,871
    Thanks
    196
    Thanked 948 Times in 732 Posts

    Default

    Kathie Lea,
    Excellent post! I've been dealing with the same problem. I had a great PCP and rheumy in San Antonio, but here in CA, the PCP told me that I "might be a hypochondriac" and the rheumy seems to not want to accept what my former docs agreed upon.
    It is so frustrating to be talked down to and ignored!
    Hugs,
    Marla

  10. #18
    Join Date
    Nov 2011
    Location
    Leahi, Hawaii
    Posts
    70
    Thanks
    33
    Thanked 15 Times in 13 Posts

    Default

    Hi chinadoll,

    Thank you so much for sharing and for the information! I showed it to my mom and I think it made her realize even more what it's like to have an autoimmune disorder. She knows what I'm going through and hears me make noise (and swear at times), but to hear/see what someone else is going through makes her realize even more what it's like to have these disorders. I was going to ask her if she wanted to join the group, but she's not very tech savy (she's still learning about email).

    It's unfortunate there are doctors out there who seem to lack compassion and what seems like a true interest in their career choice. I'm thankful for my PCP/GP. I don't know what I would do without him and his stand-in! They're trully one of the first doctors in ages who have listened to me and fought to make me better.

    I'm not sure what other overlapping disorders I may have, but I have written down every symptom I have felt since everything began (in moderation, of course. I wouldn't list "sneezing" down when I knew my allergies were haywire from the weather). I realized I forget some symptoms when I go to the doctor. But when it came to seeing the Rheumy I didn't tell him everything because he treated me like I was crazy - especially for believing my doctor for diagnosing me with Lupus. I trust my doctor whole-heartedly, so it was hard to listen to what the Rheumy had to say after that. I noticed last night that my "after visit summary" listed the tests the Rheumy ordered from my blood: Sjogren's antibodies and Lupus Panel, so I'm waiting to see what the results of those are.

    You can't keep weight on? Gosh, I wish I had that problem! I can't seem to lose the weight I've gained since becoming sick. And as if that wasn't enough, I seem to be still gaining. I'm not an unhealthy eater and don't just sit around all day, so it's a little frustrating. I'll be adding more walking and starting to use an exercise bike once I can get someone to help me get it from my grand-aunt's house.

    I love long messages! Because I know there's a lot of experience and information in there! So thank you for that!

    Blessings, Love & Aloha,
    Ty
    "Kindness is just love with its work boots on"...

    "No man stands so tall as when he stoops to help a child." Abraham Lincoln

  11. #19
    Join Date
    Nov 2011
    Location
    Leahi, Hawaii
    Posts
    70
    Thanks
    33
    Thanked 15 Times in 13 Posts

    Default

    Quote Originally Posted by debbie-b View Post
    I can't stand massages, it hurts so much, that I cry out in pain. I have alot of muscle, skin, bone,spine and joint problems. My skin hurts badly, when I dry myself off, after a shower.

    Debbie
    Hi Debbie

    Wow, I don't know what I'd do without massage. My close friend usually does my massage and I can tell her if it's too hard or too soft. But what I like about her is she doesn't just massage - she also stretches. I tell her what's bothering me and she'll stretch it out (usually my legs since she knows the muscles better than I do).

    I'm sorry to hear you and chinadoll have a lot of skin pain. My skin pain is minimal comparing to the both of you. My skin does burn, but it's not sensitive to touch. It really burns if I wear shoes all day, but I just opt to wear something less constricting until I need the shoes.

    Thank you for sharing!

    Blessings, Love & Aloha,
    Ty
    "Kindness is just love with its work boots on"...

    "No man stands so tall as when he stoops to help a child." Abraham Lincoln

  12. #20
    Join Date
    Nov 2011
    Location
    Leahi, Hawaii
    Posts
    70
    Thanks
    33
    Thanked 15 Times in 13 Posts

    Default

    Hello again, Marla

    It's definitely frustrating when a doctor talks down or ignores you! It makes it even worse when they start to talk down about your previous doctors, the doctors who did their job by helping you feel better. It's all an ego trip and makes going to see them so frustrating. That's why I didn't go for a very long time.

    When I was on my previous medical insurance plan, one of the doctors pegged me as a hypochondriac. Whenever I'd go to see ANY of the doctors in the system, they would be happy when they met me. As soon as they opened my file, their demeanor would change drastically and they'd treat me like I was an idiot who was wasting everybody's time. I realized what had happened after the second or third doctor then I completely dropped that plan. When they called for a survey, the woman on the phone was very apologetic, but it was too late - I was never going back.

    Hoping we all find happy doctors (((gentle hugs)))

    Blessings, Love & Aloha,
    Ty
    "Kindness is just love with its work boots on"...

    "No man stands so tall as when he stoops to help a child." Abraham Lincoln

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •