Wrongly diagnosed for 2 years - see real cause

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Misdiagnosed, Sep 3, 2003.

  1. Misdiagnosed

    Misdiagnosed New Member

    Hi People

    I just want to let you know that I've been in the 'fibromylgia basket' for 2.5 years when my problem was really something else. It was/is a muscular problem - one muscle in particular - the psoas muscle.
    I am sharing this with you in the hope that my story may help someone - it is worth investigating.

    Hardly anyone has heard about this muscle, let alone what effects it can have on the body. It is tucked deep inside your spine and connects to your iliacus muscle in the hip bowl and attaches to leg tendons etc. It shares the same insertion point in the spine as your trapezius muscle so has the potential to alter your entire body's mechanics. Which it did to me.

    I was getting fibro-like symptoms, waking up early, nervous system jittery, tingling, numb hands and fingers, irritable bowel, blocked sinuses, muscle spasms, hip, neck, back pain, breathing problems, depression, agitation etc etc.

    It's taken me 10 months of intensive physical therapy to make enough progress to be sure that the psoas spasm I had is the root of all my problems. I have more lengthening and stretching of the psoas to be symptom-free but I can tell I will get my body back.

    I went to countless specialists, neurologists, gastroenterologists and rheumatologists with negative results but I was getting to the point where I couldn't breathe and my nervous system was constantly burning tingling. I was put on antidepressants which helped me stay asleep.

    After a lot of research I flew to Adelaide to be diagnosed by a psoas specialist and she said my left psoas muscle was short and tight which is common on your dominant side, this had caused a gradual rotation of the right side muscles in an attempt to create pelvic balance. So my body was already out of balance without me realising it. 2.5 years ago I started to get a pulling sensation under my ribs, then got severely constipated (tight psoas inteferes with bowel function), which then shut down my right shoulder, then due to emotional stress I had a bad spasm in the right hip. My body locked up in a loop and I developed fibrous tissue all through my back. I had to give up work, my symptoms were getting so bad. Everywhere was pulling.

    To cut a long story short I've been getting psoas releases, remedial massage, laser acupuncture and using a home trigger point locater/treater to get me to where I am now. It has been a huge struggle to keep believing the psoas could cause all my symptoms.

    If anyone is interested in more info. please contact me. The physio I saw in Adelaide has written a book based on her clinical experience of what the psoas can do to the body called 'Front To Back - the hidden culprit'. She said some of her patients over the years have been told they've had MS when it was all a psoas problem.

    I don't want to give false hope to anyone suffering, but I strongly recommend that you at least have your psoas muscles looked at by a trained therapist - they should be able to tell you whether they are tight and contributing to your problems.

    Wellness wished to everyone
    Gill
    Waynesrhythm likes this.
  2. EZBRUZR

    EZBRUZR New Member

    Thanks!
    Peace,
    eZ
  3. sumbuni

    sumbuni New Member

    how many of us may actually have something that could be treated or even cured. Most docs don't acknowledge cfs/fms, and others use them as a catch all for when they can't figure it out, or dont want to spend the time it might take to find a hidden culprit that is making our lives a living hell...instead, they treaat the symptoms and move on.

    Glad you have found the real problem. It sounds as tho there could be an end to your suffering.

    God Bless!

    Love,
    sumbuni
  4. Mrs. B

    Mrs. B New Member

    when you were misdiagnosed, did you have the tender spots? If so, how many?

    Thanks,
    Lisa
  5. klutzo

    klutzo New Member

    I only wish insurance here in the U.S.would pay for that much physical therapy. I am on Medicare, which only pays for twelve sessions per year per problem.
    I am very happy for you and that your hard work has paid off.
    Klutzo
  6. donna13210

    donna13210 Member

    Never heard of this before.....amazing!

    Learn something new every day. Thanks so much for letting us know.
  7. pam_d

    pam_d New Member

    I always say, we sure have to be the best detectives in the world to try to figure out what's going on underneath all these debilitating symptoms. Sounds like you persevered until you found out what was going on, and managed to see the right professionals who knew how to diagnose this. I'm so glad you are on the right road to recovery now!

    Keep us posted...

    Hugs,
    Pam
  8. Misdiagnosed

    Misdiagnosed New Member

    Tender spots - hmm, they were more like stuck spots (you could feel lumps under my skin where muscle wasn't sitting flat), although a rheumatologist told me I had FM and offered anti-depressants and Feldenkrais therapy. I never seemed to have as much muscle pain as most FM people, but I had lots of myofascial pain and tight muscles and nervous system symptoms.

    Hope that answers your question

    regards
    Gill
  9. tnnanatx

    tnnanatx New Member

    What is the DRS name. What type of DR also and how do you find one. I don't know if I'm just in denial but I keep thinking what if it's something else. I take some pretty strong medicine and feel queasy all the time. I'd hate to be putting this junk in my body if I truly didn't need it.
    I'm so happy for you and don't give up.
  10. brneyedgrl

    brneyedgrl New Member

    Do you have chronic pain in your hip also? When I went to see my allergist I had asked him if all of my problem could be FM or CFS since I had multiple chemical sensitivities and he told me that this diagnosis would come at a later date. He told me he wanted to try to find the root of the problem. He said alot of people get labeled with FM and CFS because the drs don't try to find the problem. When I go back to him I will ask him about this.He seems to be the only one I have been to that wants to try to help me. I wonder if this can be injured due to lifting? Good luck!
    brneyedgrl
  11. Misdiagnosed

    Misdiagnosed New Member

    An osteopath was the first to say I'd had an iliopsoas spasm but his treatment didn't help so I gave up after 6 weeks. I was getting such weird symptoms I thought something else must be wrong so spent a lot of time going to my doctor and seeing specialists and having tests. The neurologist wanted to put me on Baclofen but I hear it's a pretty serious drug that works on your spinal column and has some yucky side effects - so I declined.

    I kept the psoas muscle idea in the back of my mind and kept trying to find info on it. Searched the Net and found an article on the Queensland FM site that talked about the psoas being possibly implicated in FM. Contacted them who put me in touch with the author of the book, Front to Back. Went to see her for a diagnosis - she thinks I'm a dramatic example of what psoas can do. My psoas was already in trouble before I had the hip spasm, so it really wrecked it.
    The symptoms she lists on her book cover are a lot of what I was experiencing so it gave me real hope:
    back pain or stiffness
    neck pain or stiffness
    headaches
    migraines
    sciatica
    numbness or tingling of hands
    groin pain
    abdonal pain
    constipation or diarrhoea
    nausea
    agitation
    impaired short term memory
    word finding difficulty
    word transposition
    inappropriate temperature response
    afternoon fatigue
    sugar or chocolate cravings
    dry skin
    brittle nails
    sensitivity to light.

    Aileen put me in touch with a masseur here in Melbourne whose done her one-day workshop and gave her additional info. on how to treat me. Aileen is groundbreaking in this area and is currently doing her thesis on it. She plans to get her work more publicised as she sees so many people who've had unnecessary surgeries and living with pain. She's very dedicated and knowledgable. I know of no other person who understands the problem as I've experienced it.

    I suggest you find someone like a remedial masseur or good physio who has some experience with psoas so at least they can tell if yours are tight. Aileen says having a psoas problem for more than 6 months means that all muscle groups start to get involved. Trigger points must be released first - stretching won't resolve it if the trigger points aren't treated.

    Hope this answers your questions
    Regards
    Gill
    Waynesrhythm likes this.
  12. Misdiagnosed

    Misdiagnosed New Member

    I had loads of right hip pain - my hip was literally jammed and all gnarly. And yes, lifting could easily cause psoas problems - because psoas runs through the back of the hip it could easily affect hip function . My remedial masseur said he pulled his psoas badly while lifting heavy things on 3 separate occasions and immediately did psoas stretches to counteract the damage.

    I had no idea what a psoas was so didn't know what was happening to me at the time. Your doctor sounds very open minded. I would pursue this with him as a possibility - also referral to a sports medicine clinic might be a good idea. They are more in tune with this sort of thing and do psoas injections on injured athletes. I've had one and it defintely helped, but I've got so many adhesions because my body's been out of whack for so long. The fascia is stuck in all the wrong places so I have to get that worked on too before the muscles have any chance of returning to normal function.

    Good luck
    Regards
    Gill
    Waynesrhythm likes this.
  13. Misdiagnosed

    Misdiagnosed New Member

    Yes, I wonder too why the psoas is overlooked when it can cause so many problems. Still, even when identified I've found very few people know what to do - simple psoas stretches didn't really help me. My problems beame so bad because I lived with my frozen shoulder and bung hip for a year and by then I had lots of fibrous tissue and stuck fascia to deal with.

    But I am getting better - I just have to persevere. Can't tell you how many hours I've spent treating trigger points, but I'm getting there!! Hope eventually I'll lose the numbness in my hands/fingers too.

    Regards
    Gill
    Waynesrhythm likes this.
  14. Ahorsesoul

    Ahorsesoul New Member

    I read your message. I do have these problems too. I have been to several physical therapists who never said a word about a psoas muscle. As a nurse, I do not remember having heard about it either. I noticed on the Yoga Jounal site they described exercises for the psoas muscle. Thanks for introducing me to something I have suffered with for 20 years and never have understood why this was a problem. I have started these exercises. It is funny that the therapists did give me part of some of the exercises but never followed thru on it!
  15. Misdiagnosed

    Misdiagnosed New Member

    Hi

    What's fasciatis and what connection does it have to the adrenals? I was under heavy duty stress when I got ill, was run down, poor diet, coffee, cigarettes, had candida, reactive hypoglaecimia etc. wouldn't be surprised if I had (and maybe still do have) exhausted adrenals. Do exhausted adrenals affect fascia, if so how?

    Let me know what treatment your doc recommends, because I think I've got nutritional stuff I need to address as well.

    Thanks
    Gill
  16. Donna39

    Donna39 New Member

    I would love to talk to you more about this. I have alwyas felt that all my symptoms were related to my back somehow.On the days that I would feel so good,my back felt great.But when my back is in so much pain,I have all these strange symptoms pop up. I had an injury a few years ago,(broken tailbone).And haven't been the same since.I have one side that is shorter than the other and most of all my symptoms are on my left-side.I also have the pulling sensation like you said,alot of burning,vibrations etc....
    My low back is alwyas swelled,and when my husband puts pressure on it,everything feels great,I can also breathe so much better.My left side always feels like I rubber band stretching when you try to do something.I would love to hear more about what you have been feeling and maybe compare,because I just know in my heart that there has got to be something else wrong with me,I think that the docs just say that you have this DD to get rid of you.
    I am going to be checking on this for sure.
    Thanks-Donna
  17. bsyounges

    bsyounges New Member

    In the past few days someone posted something about a relationship between CF/FM and bruising or breaking your tail bone. something about that is where the sypathetic and parasympathetic nervous systems coming together. when the area has a "trauma" it can set the DD in motion. A lot of people chimed in about how they had never thought about it but had suffered the same injury before they got sick.

    Do a search for tailbone, I bet WAIT WAIT...the tread was titled "IMPORTANT! MISDIAGNOSIS OF CFS/FM COMMON" it was started on 8/30 by being-healed
    good luck, bsyounges
  18. Misdiagnosed

    Misdiagnosed New Member

    if you want to contact me directly, see my profile for my email address. The next post is interesting too, as I do a have a swelling on the right side near my tailbone too. CT scan showed a disc bulge 'with no nerve entrapment'. According to Aileen lots of these things are caused by muscle problems that then affect the joints.Not the other way round. She's seen countless cases of people having back surgery with no improvement, but when the psoas muscle is treated things improve.

    Regards
    Gill
  19. Misdiagnosed

    Misdiagnosed New Member

    Not familiar with that abbreviation in Australia.

    Thanks
    Gill
  20. hazey

    hazey New Member

    Sorry to dig up such a old thread.<BR>
    <BR>
    Hi Gill, Long story short I believe my problem are related to my chronic tight psoas. I was very surprised to read the comments regarding adrenal fatigue as that is one of my problems I have.<BR>
    <BR>
    I would love to get some more info from you and hear about your progress. I am in sydney and need to find a therapist who knows how to resolve the psoas problems<BR>
    <BR>
    Thanks<BR>
    Aidan