joint pain but no diagnosis

rosemaryandtime
rosemaryandtime Member Posts: 6
edited 19. May 2018, 11:31 in Living with Arthritis archive
hi everyone, i have really bad joint pain that has gotten progressively worse over the last year. i've had sciatica / bulging disks in my lower back for 5 years, but now i have severe hip pain, knee pain, and ankle pain, worse on one side. reading about OA online i'm fairly certain that's what i have. i have clicking/popping and grinding sounds alongside the pain.

my physical therapist confirmed that i have joint problems. but whenever i ask a doctor about arthritis, they say i'm too young and i just need to exercise more (i'm 27). i've been taking their advice for 5 years, getting regular physical therapy and modifying my diet (vegan without sugar, plenty of fruits & vegetables), but i'm getting worse. i can't walk now without a cane and i need to take taxis everywhere, and i can't hold down a normal job.

i'm super frustrated and the only thing keeping me going is this gut feeling that something serious is wrong with me. i have to stay strong and keep going to new doctors in search of a diagnosis and a referral to the proper department.

looking for advice from anyone on this forum on how to stay strong when it seems like everybody is doubting the legitimacy of my pain. thank you

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hi rosemaryandtime Welcome to the forum, sorry you are having a rough time at the moment. This forum is full of lovely understanding and encouraging people who will help in any way to make you feel one of them,we all suffer with Arthritis to varying degrees.The most popular forums are Living with Arthritis and Chit Chat.
    All the best Christine
  • Airwave!
    Airwave! Member Posts: 2,428
    edited 30. Nov -1, 00:00
    If you have arther on your back and no diagnosis it can be a bad time for you, your mind can set in motion anxieties that nibble away at your confidence and lower your esteem.

    A diagnosis does allow the anxieties to fade and then you can get on with the real job of dealing with arther and managing the rest of your life.

    I used to complain to my parents about pain when I was little, they always said it was growing pains and I was 25 before a doctor looked at my toe and said 'its a touch of arthritis, you'll be fine, go and get on with your life', my most recent doctor (aged 63) says, 'oh its just arithritis'.

    Until the medical profession takes more notice of us we are in limbo and they won't send us for further investigation until their attitude changes.

    Stick with the forum.
  • palo
    palo Member Posts: 240
    edited 30. Nov -1, 00:00
    Airwave! wrote:
    If you have arther on your back and no diagnosis it can be a bad time for you, your mind can set in motion anxieties that nibble away at your confidence and lower your esteem.

    A diagnosis does allow the anxieties to fade and then you can get on with the real job of dealing with arther and managing the rest of your life.

    I used to complain to my parents about pain when I was little, they always said it was growing pains and I was 25 before a doctor looked at my toe and said 'its a touch of arthritis, you'll be fine, go and get on with your life', my most recent doctor (aged 63) says, 'oh its just arithritis'.

    Until the medical profession takes more notice of us we are in limbo and they won't send us for further investigation until their attitude changes.

    Stick with the forum.


    Hear hear, I am so sick of being dismissed with its just arthritis, we can't do anything about it....
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. There is evidence that osteo arthritis is beginning for some earlier in life than is usually expected but it can appear to us that the medical profession generally remain convinced that it is the preserve of the elderly.

    Whilst it's true to say that not a lot can be done it isn't true to say that nothing can be done. I assume from your vocabulary that you are American or Canadian; I daresay that once you have convinced your doctors that something is amiss then you will be given a similar treatment as here, with pain relief, maybe an anti-inflammatory medication and a course of physiotherapy to help preserve the range of movement in your joints. What pain relief are you currently taking?

    Any form of arthritis is progressive and degenerative and, if one is fortunate enough to have it in the right joints, replacements can make all the difference but that won't happen until certain levels of damage are achieved - well, that's the case over here. Have you even had any Xrays to determine whether there is visible joint damage? If not, I think that would be a sensible next move. As for the pain it's part-and-parcel of the condition, my knees click and grate but that's because they are bone-on-bone: other joints are getting that way too because that is the nature of the beast.

    Have a read of The Spoon Theory and There's a Gorilla in my House, both give clear, concise explanations of how it is living with a long-term, chronic condition. I was able to work for seventeen years but was lucky in that I was self-employed so could tailor things to suit my ever increasing needs (and ever decreasing abilities). DD
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    I'm in a rush :oops: Sorry. But Arthritis Care are looking for precisely people with your problem so that they can improve services to you. Here https://arthritiscareforum.org.uk/viewtopic.php?f=47&t=49232
  • rosemaryandtime
    rosemaryandtime Member Posts: 6
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    Hello, it's nice to meet you but I am sorry you have had to find us. There is evidence that osteo arthritis is beginning for some earlier in life than is usually expected but it can appear to us that the medical profession generally remain convinced that it is the preserve of the elderly.

    Whilst it's true to say that not a lot can be done it isn't true to say that nothing can be done. I assume from your vocabulary that you are American or Canadian; I daresay that once you have convinced your doctors that something is amiss then you will be given a similar treatment as here, with pain relief, maybe an anti-inflammatory medication and a course of physiotherapy to help preserve the range of movement in your joints. What pain relief are you currently taking?

    Any form of arthritis is progressive and degenerative and, if one is fortunate enough to have it in the right joints, replacements can make all the difference but that won't happen until certain levels of damage are achieved - well, that's the case over here. Have you even had any Xrays to determine whether there is visible joint damage? If not, I think that would be a sensible next move. As for the pain it's part-and-parcel of the condition, my knees click and grate but that's because they are bone-on-bone: other joints are getting that way too because that is the nature of the beast.

    Have a read of The Spoon Theory and There's a Gorilla in my House, both give clear, concise explanations of how it is living with a long-term, chronic condition. I was able to work for seventeen years but was lucky in that I was self-employed so could tailor things to suit my ever increasing needs (and ever decreasing abilities). DD

    Thanks for the suggestions! This Gorilla in my House blog post made me smile: http://batsgirl.blogspot.tw/2008/04/gorilla-in-your-house.html

    To answer your questions, I'm not on any anti-inflammatories right now. I took 800mg of ibuprofen daily for several years and my gut feels weird about that now. I was also on painkillers for several years, and I much prefer being clearheaded without them. Which means I rely on occasional medication when I'm having a flare up, as well as topical creams like Arnica or Voltaren. I've also been in physical therapy every week for about 5 years now, hopping around therapists as soon as it seems like their exercises are causing me too much pain to go on.

    I've gotten back/spine MRIs and x-rays, but the logical next step is checking out my hip and my knees but I'm really afraid of having doctors tell me nothing is wrong because of my age. I'm preparing mentally for the next leg of this journey and the struggle I'm sure to go through in search of diagnosis.

    My friends are finally beginning to understand that this is a permanent thing. i've actually lost my temper a few times after suggestions that i exercise more or evaluate my ergonomic computer setup etc., i've had to put my foot down and say no, this is not my fault, and it's not something that i can cure by changing my actions. it's not something that can be managed the way someone else in their twenties would manage pain. i've tried all that, and i've held out hope that i can make a full recovery, since that's what the doctors have been telling me. but it's been too long and i'm just getting worse and new joints are going out. this is a real part of my life that i need to stop resisting, because it's not going away. i can't wait to get diagnosed with SOMETHING so that i can tell anyone who judges me that they should stop being so narrow minded.

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