Discussions By Condition: I cannot get a diagnosis.

Hypermobility, Fibromyalgia, Muscle Weakness...

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: Befuddled
  • February 13, 2009
  • 10:03 PM

I apologise in advance for the length of this; I'll try to be concise...

I have been diagnosed as having hypermobility joint syndrome with 'aspects' of fibromyalgia. I feel a little fobbed off but would appreciate the views of others as to whether this fits.

3 years ago I was pretty athletic, doing between 9 and 12 fitness classes each week. I gradually developed patellofemoral pain syndrome and over time reduced the activity to an eventual cessation of all gym activities, food/clothes shopping etc to avoid pain.

Since then I have developed widespread chronic pain. My feet have dropped and are now severely over pronating. I have weakness in the glutes and scapula winging seems to indicate weakness in some muscle in my back(?). I have an aching in my arms when raised which can become agonising over time with activities such as using the telephone, styling my hair, typing etc. I also have lower back ache regularly but in particular it seems to 'spasm' if I try to get up from lying flat.

I have had custom orthotics to correct my overpronation for about 6 months.

The doctor prescribed amitriptyline which I am currently taking 20mg with a view to increasing them until it helps with the pain. I am getting weekly physio and on a waiting list for hydrotherapy.

Do I need to concern myself about the reason for the muscle weakness or can this really be a result of hypermobility?

Oh and just incase it's connected I have also developed really bad eczema on my fingers that are now extremely sensitive to everything (shampoo, conditioner, shower gel, cleaning products, moisturisers, you name it!). I was diagnosed with Hyperprolactinaemia about 15 years ago. I am a 33 yr old female.

I am hopeful that someone can shed some light on this and help me either trust the diagnosis or look at other possibilities that I can discuss with my GP. :confused:

Reply Flag this Discussion

10 Replies:

  • Thanks Blaze; I am pleased to confirm I have had all the tests necessary to confidently dismiss electromagnetic/microwave radiation. At least that's one less thing to worry about!
    Befuddled 2 Replies
    • February 13, 2009
    • 10:48 PM
    • 0
    Flag this Response
  • I don't think hypermobility is connected with muscle weakness, but please take a look at this site, it's loaded with informationhttp://www.hypermobility.org/Good luck! :)
    Felsen 510 Replies
    • February 14, 2009
    • 00:38 AM
    • 0
    Flag this Response
  • Thank you for the info Felson; that website has been really helpful and informative! You are right though I still can't find anything relating HMS to muscle weakness. It's very confusing!
    Befuddled 2 Replies
    • February 14, 2009
    • 03:14 PM
    • 0
    Flag this Response
  • I have Hypermobillity, Fibromyalgia, Muscle Weakness...but i also have other conditions that could cause it. im with you though on your quest for answers. im being tested for connective tissue disease. i reccomend that you look them up.. especially polymyositis, although these conditions are rare, its also rare to posess weaknesses such as this. just check it out. it cant hurt.
    Anonymous 42789 Replies
    • February 14, 2009
    • 04:30 PM
    • 0
    Flag this Response
  • You know, Befuddled, it can very well be that you have two different conditions that have nothing to do with each other. I know very little of muscle weakness. The only condition I know of is a hereditary condition called Friedrich's ataxia. But usually you discover it earlier and it is a very rare condition. Both parents must be carriers without necessarily being sick themselves. A relative of mine has it and his first symptom was trouble with his balance. Also, as far as I know it only gives weakness and not pain. But as I said, it’s very rare and the probability is very little that you would have it. I hope somebody with more knowledge sees your post. Good luck! :)
    Felsen 510 Replies
    • February 14, 2009
    • 05:18 PM
    • 0
    Flag this Response
  • I apologise in advance for the length of this; I'll try to be concise... I have been diagnosed as having hypermobility joint syndrome with 'aspects' of fibromyalgia. I feel a little fobbed off but would appreciate the views of others as to whether this fits. 3 years ago I was pretty athletic, doing between 9 and 12 fitness classes each week. I gradually developed patellofemoral pain syndrome and over time reduced the activity to an eventual cessation of all gym activities, food/clothes shopping etc to avoid pain. Since then I have developed widespread chronic pain. My feet have dropped and are now severely over pronating. I have weakness in the glutes and scapula winging seems to indicate weakness in some muscle in my back(?). I have an aching in my arms when raised which can become agonising over time with activities such as using the telephone, styling my hair, typing etc. I also have lower back ache regularly but in particular it seems to 'spasm' if I try to get up from lying flat. I have had custom orthotics to correct my overpronation for about 6 months. The doctor prescribed amitriptyline which I am currently taking 20mg with a view to increasing them until it helps with the pain. I am getting weekly physio and on a waiting list for hydrotherapy. Do I need to concern myself about the reason for the muscle weakness or can this really be a result of hypermobility? Oh and just incase it's connected I have also developed really bad eczema on my fingers that are now extremely sensitive to everything (shampoo, conditioner, shower gel, cleaning products, moisturisers, you name it!). I was diagnosed with Hyperprolactinaemia about 15 years ago. I am a 33 yr old female. I am hopeful that someone can shed some light on this and help me either trust the diagnosis or look at other possibilities that I can discuss with my GP. :confused:I feel exactly the same way - and will be watching to see what you come up with as I continue my journey and quest to find someone who can give me some answers. I am 36 and have been very active my entire life. This is debilitating me to the point of fatigue and pain constantly thoughout every day. I base whether I should get up and walk across the house because it exhausts my lef muscles primarily. Although it is all throughout the body. I have been told Fibromyalgia and Diabetes Insipidus but no one can get to the bottom of the muscle problem. Thanks for bringing this up. Golden
    Anonymous 42789 Replies Flag this Response
  • I have both hypermobility and fibromyalgia.I was taking Ultracet (combo drug of Ultram and tylenol 650mg ) but the pharmacist told me if we had the doctor switch the prescription to Ultram and I bought the tylenol arthritis over the counter it would do the same and cost less. I was on that for a couple of years for my joints until the fibromyalgia flared up to extreme levels. Now the doctor has me on Lyrica 75mg twice a day for the fibromyalgia but you can't take Ultram at the same time. I have a custom made leg brace to prevent my left knee from going back words but it is so heavy that my muscles can't hold it up or walk with it on.hope this helps-Christine
    Anonymous 42789 Replies Flag this Response
  • get off the sucralose, splenda and aspartame- found in diet sodaseverything really, even in gum and children's vitamins : \read labels and do not eat this stuff anymore it is poison and it sounds like you have most of the symptomsread about them on the internet check the symptoms for each one- disregard the Industry(company who made the product) advertisements on different sites that tell you they are safe - there are enough testimonials and people who will tell you on facebook groupsyoutubeand google that they were harmed by them and know because they were where you are and stopped eating them and now are better.Trial and error, they learned what was causing them these problems- now you know too!
    founddog 188 Replies Flag this Response
  • Check into muscular dystrophies, pompe's disease, etc. I am. You would have to go to a geneticist or at least an endrocrinologist.
    Anonymous 42789 Replies Flag this Response
  • I would really recommend seeing a neruologist to thoroughly check out your weakness, laxity, reflexes, range of motion, balance, sensation, etc. They may find other symptoms you never new you had that can point to something specific (facial weakness, lid droop, gait abnormalities, etc). Also, they can help rule out spinal cord compression from a slipped disc, bony outgrowth, or overuse injury you never knew you had. There are also possible systemic endocrine abnormalities that can cause joint laxity, muscle weakness and fatiguability. Given your history of hyperprolactinemia--I'd be inclined to check your pituitary hormone cascades, particularly IGF-1, thyroid values (including RT3), and cortisol/ACTH... especially if your hyperprolactinemia was from a pituitary tumor that was surgically removed.I'm investigating something similar myself right now--best of luck to you!
    Anonymous 42789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.