Page 1 of 2 12 LastLast
Results 1 to 10 of 15

Thread: Hypermobility?!

  1. #1
    Join Date
    Mar 2011
    Posts
    14
    Thanks
    21
    Thanked 1 Time in 1 Post

    Default Hypermobility?!

    Does anyone on here have hypermobility as well as Lupus?
    My daughter finally had her appt. and the Dr. thinks she is hypermobile and doubts she has Lupus. It might explain some of the joint pain, but it surely does not explain ALLLLL the other symptoms she is having as well as the ANA test! I am a bit frustrated. The Dr. sent us home with some different exercises for her to do and told us to buy her new shoes, then scheduled another appt. for Oct. New shoes?! Really??

  2. #2
    Join Date
    Apr 2009
    Location
    Kentucky
    Posts
    1,165
    Thanks
    234
    Thanked 143 Times in 105 Posts

    Default

    You saw a rheumatologist at a Childrens right? I would think you would be coming back sooner than that with all those problems she was having, if nothing else to see if she was getting any better with what they were telling her to do. Did they not even give her any medicine? I think its really important if she is sick to start on medicine now. Did you see PT while you were there? I got special orthopedic inserts when I saw them that were fitted for my feet and they actually do help a little bit. I would ask about that maybe.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

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

    Kayla's Mom (06-09-2011)

  4. #3
    Join Date
    Mar 2011
    Posts
    14
    Thanks
    21
    Thanked 1 Time in 1 Post

    Default

    Yes, it was a rheumatologist at a Children's Hospital. No, they did not give her any medication. Yes, she did see a psychical therapist. Oct. 3rd is the next appt. I just can't believe with all her symptoms that more isn't being done.

  5. #4
    Join Date
    Apr 2009
    Location
    Kentucky
    Posts
    1,165
    Thanks
    234
    Thanked 143 Times in 105 Posts

    Default

    I would try to get in earlier than that. Tell them you think that they need to look more into what is going on with her. When my mom says stuff like that they tend to listen to her more than my complaints. I was complaining of a fast heart rate and trouble breathing for almost 6 months before it got looked into. It took a really bad flare, pulse of 166, and my mom putting her foot down to get more tests done and an appointment with a pulmonologist. I hope that you can find some relief for her. Im kind of suprised they didnt start her on any medication at all. If you see that rheumatologist again and they dont do anything I would ask to see another one at that Childrens. I almost did that with mine because I didnt feel like she was always listening to me.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

  6. The Following User Says Thank You to ritzbit For This Useful Post:

    Kayla's Mom (06-09-2011)

  7. #5
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,526
    Thanks
    1,548
    Thanked 1,743 Times in 1,212 Posts

    Default

    Oh I am so sorry about this! This happens way too often (I actually posted about this just a few moments ago)! Some doctors have are in such a hurry and hard headed that they look at the meds, ask traditional symptoms and then dismiss everything because going through and finding out what is REALLY wrong will take too much time. They are great when the answer fits in their little box but not so great when they really have to take the time to ind those answers!

    I will say this again (from another thread). Fire that man and find another that is willing to really LISTEN. Even if it isn't Lupus or an AI disease something is going on with her and she needs help!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  8. The Following 2 Users Say Thank You to tgal For This Useful Post:

    Kayla's Mom (06-09-2011), steve.b (06-08-2011)

  9. #6
    Join Date
    May 2007
    Location
    Seaside, Ca.
    Posts
    3,871
    Thanks
    196
    Thanked 948 Times in 732 Posts

    Default

    Hi Kayla's Mom,
    It's good to see you here again. I agree with Mari. Keep pushing for better answers than just new shoes! This doc is just trying to dismiss you with an easy answer.
    If the Children's hospital doesn't help, try a teaching hospital associated with a good medical school.
    Hugs,
    Marla

  10. The Following User Says Thank You to magistramarla For This Useful Post:

    Kayla's Mom (06-09-2011)

  11. #7
    Join Date
    Apr 2010
    Location
    Mackay, Australia
    Posts
    272
    Thanks
    84
    Thanked 108 Times in 68 Posts

    Default

    Hi there : )

    I am posting some information here because hypermobility is a symptom of a number of serious illnesses, so I wouldn't say that such a diagnosis is a step backwards. One such illness, is lupus. A diagnosis of hypermobility is a step towards a diagnosis for what may be an overall condition. What are her other symptoms may I ask? I wouldn't completely write that doctor off, but I would immediately look into other specialists that may be able to work with what has already been diagnosed. The doctor certainly does sound a bit cynical and should have offered for in between now and the next appointment than new shoes!

    But, please dont see his denial of lupus as a bad thing right now, because what he DID diagnose her with is a symptom of lupus, putting his foot right in it anyway. You will probably find it easier for get a proper diagnosis now.

    Anyway Im rambling... here is some basic information on hypermobility.

    Some people have hypermobility with no other symptoms or medical conditions. However, people with hypermobility syndrome may experience many difficulties. For example, their joints may be easily injured, be more prone to complete dislocation due to the weakly stabilized joint and they may develop problems from muscle fatigue (as muscles must work harder to compensate for the excessive weakness in the ligaments that support the joints). Hypermobility syndrome can also lead to chronic pain.

    Hypermobility may also be symptomatic of a serious medical condition, such as Ehlers-Danlos syndrome, Marfan syndrome, rheumatoid arthritis, osteogenesis imperfecta, lupus, polio, Down syndrome, morquio syndrome, cleidocranial dysostosis or myotonia congenita.

    In addition, hypermobility has been associated with chronic fatigue syndrome and fibromyalgia. During pregnancy certain hormones alter the physiology of ligaments making them able to stretch to accommodate the birthing process. For some women with hypermobility pregnancy-related pelvic girdle pain can be debilitating due to these two converging factors, and prohibits her from standing up or walking.

    Symptoms of hypermobility include a dull but intense pain around the knee and ankle joints and the soles of the feet. The condition affecting these parts can be alleviated by using insoles in the footwear that have been specially made for the individual after assessment by an orthopaedic surgeon and orthotist.


    I would be looking into ehlers-danlos syndrome, just in case.

  12. The Following 4 Users Say Thank You to giggle For This Useful Post:

    Dance in the Rain (06-18-2011), Kayla's Mom (06-09-2011), Peridot20_Gem (06-09-2011), steve.b (06-09-2011)

  13. #8
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,526
    Thanks
    1,548
    Thanked 1,743 Times in 1,212 Posts

    Default

    Hey Giggles,

    Thank you for the information! I think the thing that made us so angry is that we have been with Kayla's mom while she waited on this appointment. We know all of the symptom kayla has been dealing with and she should have been started on some kind of medicine because there is much more going on with her then hypermobility! It is one thing for the doctor to say "I can see the hypermobility but I also think we need to do more testing because there is so much more going on". To offer this diagnosis and then say "I will see you after suffering for 3 more months" just does not see appropriate to me.
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  14. The Following 2 Users Say Thank You to tgal For This Useful Post:

    giggle (06-08-2011), Kayla's Mom (06-09-2011)

  15. #9
    Join Date
    Feb 2011
    Posts
    2,036
    Thanks
    345
    Thanked 365 Times in 315 Posts

    Default

    Hello Kayla's mom,

    Like it's been mentioned get rid of him, since day one of joining we your daughter as been so ill.

    You can't say one minute you have this and all of a sudden they change their minds wheather it be an adult or child, she needs properly looking at, even though you've seen the specialist, Kayla needs diagnosing properly not just being told she as something then it's bye.

    ((Hugs to you both)) Terri xxx

  16. The Following User Says Thank You to Peridot20_Gem For This Useful Post:

    Kayla's Mom (06-09-2011)

  17. #10
    Join Date
    Mar 2011
    Posts
    14
    Thanks
    21
    Thanked 1 Time in 1 Post

    Default

    I appreciate your post. I have done all of the research I could possibly do for hypermobility. I was surprised to read that it was linked to Lupus. Her symptoms are: joint pain in the hips, knees, ankles, elbows, wrists. Confusion (brain fog), headaches, dizziness, reaction to the sun (sick in bed for a day or two after being in the sun), irritable, mood swings, nosebleeds, easily bruises, gums bleed, skin is sensitive (she says it burns when she is lightly touched), weight gain, FATIGUE, chest pains, shortness of breath, bad stomach pains, blurred vision, back pain, nauseous, sweats for no reason....I am sure I am forgetting something, but you get the idea.

Posting Permissions

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