Denial or Misdiagnosis?

okay so I’m stuck! when I was. first diagnosed w fibro a few yrs ago I thought it didn’t make much reasons were bcuz the rheumatologist took one look at my hyperflexxia in my knees and the crazy way my hamstrings jerk violently in protest with the slightest passivestretch and said WHAT? they sent u to me? u need to see a neurologist! the neurologist said I had muscle weakness.they thought myasthenia Travis but when blood teat came back negative as well as normal brain MRI they concluded “probably fibromyalgia”.so that’s how I got my DC.the weird thing is I don’t have ANY of the tender pts when tested by multiple drs. i tried to accept it anyway and move on best I could …that’s been a lot of pain meds. I have scoliosis and DDD.waiting now for MRI if my spine. the thing is Ive had trigger points since a teen. those r quite different than tender pt s. I functioned good all my life despite chronic pain…until my legs stopped working right. I can’t go up a flight of stairs or pick things up off the knees r unstable and hyperextend…one leg’s now functionally longer than the other.walking is hard! I am fatigued all the time.what do u think? haven’t worked for two yrs now.had to quit my daycare a single mom and don’t know what to do.trying not to lose my house.also struggling to determine whether I should apply for disability or whether that would waste more time energy and finances though I doubt I could keep even a of job its gotten so I crazy? should I b questioning this stuff? I can’t accept it.I know I have sciatica and carpal fibro the source or result of my underlying issues?? please life is hanging on by a thread. I’ve lost almost everything and im at rock bottom trying to figure it out.

sorry about the typos and just want to add that im not trying to be a downer I just was hoping someone could.give me a new perspective l.I do realize my attitude and inner health is the most important thing was I don’t want to b obsessed w my illness.I will b honest that im hurt right now that no one has replies.kinda feels like rejection as I am brand new to any support group.sorry:(

Welcome, LovingDaisy! You have a lot on your plate so it's good that you came here to visit. I hope we can help you and make you feel better about yourself too.

NO, you are NOT crazy. You have some very real and concerning symptoms going on. You are right to question things and try to get the best and most accurate diagnosis possible so you can get the best treatment possible. If you were a diabetic, you wouldn't want to be sent to a foot doctor, would you?

Your hyperextending is ringing bells for me. We have others on here with that too and I know it can be a symptom of another disorder. Let me go look and see what I can find and get right back to you.

Here we go:

Please make sure to read all of the differen types of ehlers-danlos, as they differ. You might find that one fits. I'm seriously wondering if this may be part of your problems. Please take a look and see if any of this sounds familiar. If not, well, maybe fibro is the issue. Who knows, maybe both? But sometimes fibro is the garbage can that doctors throw patients into when they don't know what the cause of a problem is. Not saying this is the case with you. I honestly don't know.

Thank you.ur very kind and understanding.gentle hug!

Hey, no one here will judge you for feeling poorly or worrying about your health or being down about things. Isn't it normal to have these feeling when you're ill?

Sometimes it takes a while, even a few days, to get the replies rolling in. Don't worry, we'll be there to help you! We're interested in you and your problems and will help as much as we can!

Can you dry your eyes now? Even if I tell you that I have several silly dogs sitting on my lap as I type to you, who are sending their doggy love your way?

I forgot to add that I didn't have too many tender point issues when I was first dxed with fibro but I do now. The illness crept up my back and into my neck. So tenderpoint pain,or lack of it, doesn't necessarily discount you from having fibro. It's just one test that docs use. And I have such tightly wound muscles that it's hard for them to feel much when touched.

silly doggies do the ok gonna check that out n let ya know what I think.also thanks for the tender point spots r in really tight muscles too.ya gotta dig to find em.ttys

Oh Loving Daisy, the Scoliosis and DDD bring terrible pain! Then add sciatica and CT! Whew! If they don't cause pain, I don't know what does! So very sorry you have all of this to deal with! It has to be overwhelming! WE are all here for you. Hope you can get some good care and substantial relief from someone?

Big hugs,


PS you are not a downer! We do not care about spelling, most of us don't remember how to spell anyway! Our fingers are gnarled and stiff, so can barely type! ha! So no worries! No judgements! We just care about YOU!!

Just another sufferer who wants to help people who are confused and hurting due to fibro. We all deserve a helping hand with this!

Gentle hug to you to, my dear,


Good. My doggies send you sloppy doggie kisses.

Your muscles sound just like mine! I think that influences our tender points. But I'm not a doctor. Just my own 2 cents.

I am so curious to know if the ED syndrome I sent you to fits some of what you're experiencing. I guess that hypermobility can cause problems in joints and stuff. You really need to talk to people with the same issue to get bettere in

Dear LovingDaisy

When you are suffering and wondering which way to go it can seem like people don't care if they don't respond immediately, but I can reassure you that is not the case. You are in a dire predicament wondering which way to turn. I am sorry that I can not advise you in that area ........of applying for disability. However, I can definitely pray that God help you to calm down because stress is going to ignite widespread debilitating pain and then you won't be able to think clearly.

We most certainly do care about you. We are here to support you. But when it comes to advice we are not doctors so we cannot advise you there.

Love and gentle hugs


LovingDaisy, I just applied for disability today. I called a lawfirm called Allsup, which others here have used. They asked me questions for about a half hour to see if I qualified. I told who my former employers were and how long I'd worked there. I also told what various illnesses I was being treated for, including the fibro. (The more illnesses the better to bolster your claim.) Then they got a rep from Social Security on the phone, which would have taken ages had I done it, but took them a few minutes. Then the Social Security person confirmed that I'd worked enuff years (5 out of the last 10) to qualify for SSDI and told me the monthly amount I'd be entitled to. Then I got some paperwork mailed to me that I had to sign and return to start the process. It was a simple process thru them. If I win, they get 25% of the back amount owed to me, no more than $6,000 or so. Probably far less.

I thought telling you of the initial process might make it easier for you to decide.

thank u!!all very good home now so can’t talkntilk later
hope y’all understand.peace! ttys! promise!!

Good night.

oh sweetheart I don’t know if my last msg went thru orbit.I was sooooo not ignoring u at family bombarded me and I didn’t get the chance to tell u…I had wondered about that syndrome before …I have pale skin…veins that much I got teased in Jr. very possible.thank u tremendously and hope u have sweet peaceful dreams tonight and that we can regroup in the morn. k? much llove

Don't worry, if you're addressing me here, I know you weren't ignoring. You seemed very busy. Family comes first. :-)

If you've wondered about the syndrome I would guess that you've got good reason to wonder. It would be nice to get meaningful answers that could help your long term health and dx.

Take care!

The best thing for you right now is that you found this site! I am astonished everyday by how much knowledge this group has. Reading the different discussions may help you with so many things. I was in a sorority in college and never felt as close as I do to the wonderful, compassionate people here. We are all in this painful club together - what helped me to feel even more connected was to read others profiles. They’ll pick you up on a bad day and welcome you back after an extended absence. They understand your pain better than the many doctors you see. I have told my daughter about this site and she said to me " I’m so glad you finally found a supportive group and now you don’t have to feel so alone because they know what you go through." She’s one smart girl! Welcome, Loving Daisy :slight_smile:

Thank you! it really is beginning to feel like we are all part of the same family…connected feels many others I apppear to be in normal health which we all know is so frustrating to those who have to see it to believe it.people don’t understand normall so it feels very relieving to not have to pretend to be fine when im not!sometimes I feel like a fraud in this helps w.the feeling of being alone
in ur pain. clearly I am not alone having found all of u.thank you!!