Discussions By Condition: I cannot get a diagnosis.

multiple symptoms, lots of pain, no diagnosis

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: Georgiegirl
  • December 11, 2010
  • 00:16 AM

Hi, I'm new to the whole message board thing, so bear with me here...
I'm a 40 yo female with severe hip, front of thigh, groin, and sacroiliac pain on the left side. I've been dealing with minor back problems for the last five years, but about 8 months ago, the pain in my hip and sacroiliac area suddenly became debilitating and every small movement makes it worse. The pain is progressing and I now must walk with a cane or lean on a shopping cart when I'm out. My life revolves around trying to avoid more pain. Xrays only showed mild arthritis in lower back, but not enough to be causing severe pain. My dr. started me with flexeril and ibuprofin, and started me on Vit. D therapy for 8 weeks because she said my levels were low. After several more weeks of no relief, she sent me to 6 weeks of phys. therapy, which seemed to make things even worse. Eventually, phys. therapy kicked me out, saying I needed more tests. More bloodtests, everything normal, and Vit. D was back up. Then came MRIs of my lumbar, thoracic, and cervical spine which showed a protruding disc at C5 and L5, but with no nerve impingement, so dr. said it didn't explain the pain. I was referred to a pain management neurologist, but my appt. isn't for another week. Yesterday my pain was so bad in my flank, thigh, and groin area that I was in tears all day. I am also having trouble urinating now and really have to strain when I go. This morning, my dr. sent me to the ER because she thought I had a kidney stone. Well, the ER did a urine test, and a CT scan of my kidney, hip, pelvis, and thigh and found nothing. I'm now home in bed feeling hopeless like I'm going to have to deal with this pain forever because no one knows what's going on with me.
I also have had chronic flu-like symptoms, extreme fatigue, along with some other weird, unexplained stuff, for several years. My dr. says it's fibromyalgia.
The pain I have in my hip/leg area is such a strange pain - It's searing, or burning, like my muscles are on fire. The area around my hip and sacroiliac area is extremely sensitive to the point I nearly jump out of my skin if it's lightly touched. I have difficulty getting out of a chair, or bed, and I have to walk my way up something in order to stand after bending over. I also have what I call "phantom itching" on my hip bone. It's an itch that feels like it's inside and on the bone and there's no way to scratch it to get relief.
I'm at the end of my rope here, and I don't know where to go next and I feel like no one believes me. I'm seriously starting to wonder if I might have MS, but I haven't mentioned it yet for fear my dr. will think, "Great, now she thinks she has MS too" and blow me off.
I'm not really sure what my question is here, sorry. But any ideas might be helpful. Is a pain management neurologist really who I should see next, or another kind of dr.? I don't want pills, I want to know what's wrong with me!

(edit) I just want to add that my dr. says my thyroid is fine, I am HIV neg, and I had a neg ANA test (former dr. thought I may have lupus - new dr. says no.) My dr. has run a full panel on me twice in the last six months, with everything coming back fine. The only unusual result I've ever had was the low Vit. D. level, which is back up now.

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9 Replies:

  • If possible, my best advice would be to setup an appointment with an Orthopedist (bone doctor). They have loads of expertise with specific areas like yours, and I think would be of benefit to you as opposed to an ER/Primary Care doctor. If you feel that your doctor does not care about you, it's time to find another doctor. Their job is to care and provide you with accurate diagnosis, treatment, and education.On a side-note, I have a friend whose father suffers from a condition called avascular necrosis that reminds me of your symptoms. Obviously not a diagnosis, but perhaps it would be helpful to read about various orthopedic disorders.Best of luck to you!
    Trophimus 2 Replies
    • December 11, 2010
    • 02:04 PM
    • 0
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  • If possible, my best advice would be to setup an appointment with an Orthopedist (bone doctor). They have loads of expertise with specific areas like yours, and I think would be of benefit to you as opposed to an ER/Primary Care doctor. If you feel that your doctor does not care about you, it's time to find another doctor. Their job is to care and provide you with accurate diagnosis, treatment, and education.On a side-note, I have a friend whose father suffers from a condition called avascular necrosis that reminds me of your symptoms. Obviously not a diagnosis, but perhaps it would be helpful to read about various orthopedic disorders.Best of luck to you!Thank you. Some good things to think about and look into. Thanks again.:)
    Georgiegirl 4 Replies
    • December 11, 2010
    • 07:39 PM
    • 0
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  • Alot of our symptoms sound like fibromyalgia. I have it and have many of your symptoms, but I get "episodes" instead of constant pain like you. The one thing I know will aggrevate fibromyalgia is sugar in your diet, stress and damp climates. I live in NY and we didn't have alot of rain this summer. I felt great! As soon as the cold weather comes around, and rain or snow, I'm in trouble. If I have alot of stress, I also have more pain. If I don't get enough sleep, I have pain. Really, really hot showers help calm the nerve endings down. I know it is very difficult to try and focus on getting sleep and not being stressed when you are in pain like that, but if you can focus on getting more rest, that may start to help. Most people don't realize the more physical activity, the more in pain you are in. If you can do something like swimming, you can get exercise without putting stress on your muscles and joints. Anti-depressants are supposed to help because it has to do with the chemicals in the brain. YOur doctor can explain why and how they work. I know that pain because when it is going to rain or snow, when I'm sleeping, I feel like I have electrical surges running through my muscles and joints where you want to cry in your sleep! I get it. I wish you the best and I hope you feel better soon.
    Anonymous 42789 Replies
    • December 12, 2010
    • 03:03 AM
    • 0
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  • Hi there, Have you been tested for Lyme's disease? Undiagnosed Lymes can cause symptoms such as arthritis, fatigue, odd sensations in limbs etc over time, and is commonly mis-diagnosed. Good luck finding an answer, Kirsty :)
    worrypot 3 Replies
    • December 14, 2010
    • 06:28 PM
    • 0
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  • Hi there, Have you been tested for Lyme's disease? Undiagnosed Lymes can cause symptoms such as arthritis, fatigue, odd sensations in limbs etc over time, and is commonly mis-diagnosed. Good luck finding an answer, Kirsty :)Kirsty, thank you for your reply. Actually, Lyme has been in the back of my mind for a long time. I'm a former vet tech and worked at a shelter with a lot of strays - I've handled more ticks than you would believe (pulled 24 off one poor doggie once!), and I've been bitten a few times. My last two doctors told me not to worry about it because I never had the rash and we don't live in an area where Lyme is usually seen. I've since learned that's not entirely true. I was going to tell the dr. today that I want tested, but my appt. was cancelled due to the blizzard. I go back on the 20th and I'm going to insist I get tested.A couple of questions though, would the arthritis be widespread or localized, and would it be seen on Xrays, MRIs, or CTs? Or is it not really arthritis, but just arthritis-like symptoms instead? Because so far they've only seen some arthritis in my lower back and that isn't even where the worst of my pain is coming from.
    Georgiegirl 4 Replies
    • December 14, 2010
    • 07:52 PM
    • 0
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  • Alot of our symptoms sound like fibromyalgia. I have it and have many of your symptoms, but I get "episodes" instead of constant pain like you. The one thing I know will aggrevate fibromyalgia is sugar in your diet, stress and damp climates. I live in NY and we didn't have alot of rain this summer. I felt great! As soon as the cold weather comes around, and rain or snow, I'm in trouble. If I have alot of stress, I also have more pain. If I don't get enough sleep, I have pain. Really, really hot showers help calm the nerve endings down. I know it is very difficult to try and focus on getting sleep and not being stressed when you are in pain like that, but if you can focus on getting more rest, that may start to help. Most people don't realize the more physical activity, the more in pain you are in. If you can do something like swimming, you can get exercise without putting stress on your muscles and joints. Anti-depressants are supposed to help because it has to do with the chemicals in the brain. YOur doctor can explain why and how they work. I know that pain because when it is going to rain or snow, when I'm sleeping, I feel like I have electrical surges running through my muscles and joints where you want to cry in your sleep! I get it. I wish you the best and I hope you feel better soon.Thank you, Irma. I wish you the best too!
    Georgiegirl 4 Replies
    • December 14, 2010
    • 10:56 PM
    • 0
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  • I know that my comment is not helpful but i want to say Hello and i am going through the same thing. im 24 and have involuntary muscle movements,muscle pain,sensitivity in my left leg,nerve pain but no back pain and i do have a positive ANA but no Lupus they say its Myonecrosis and sciatica but i think it is something else because i have bad abdominal pain and had my appendix removed last month and also when i have my blood drawn it shows signs of pancreatitis but i do not have that either so i am wondering why my organs are shutting down slowly. i am stuck and confused and the best thing the docs do for me is nerve blocks and pain meds (lyrica150mg&percocet10/325) which helps me get out of the bed and attend life at least. i know you don't like pills but if you just go to your PM appt they will help you with safe ways to pain management because trust me it will save your life. at first i was depressed by the pain now i have a little more hope knowing i can move about. the nerve blocks are good too but they ware off and have to be repeat at least every other month. i get them once a month from PM so hopefully they can help you better than ever...good luck on everything and im praying for your pain to decrease@(=__=)@
    Anonymous 42789 Replies
    • December 15, 2010
    • 06:02 AM
    • 0
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  • Hi there, I have read up on Lyme's a lot recently, as am waiting back for a test myself. I have shortness of breath, fatigue, numb right leg, sore shoulder and sometimes dizziness. I live in Scotland, where Lyme's is present in the north and east but rarely diagnosed. Doctors here tend to either say we don't have Lyme's or that can't have it without rash, but I know people who have tested positive anyway. I have had a few tick bites in the past and gather the rash only occurs in about a third of cases (half of all people diagnosed don't even reall a tick bite, and diagnosis can take years). Doc is only testing me as I work outdoors so it was suggested as a potential diagnosis for ongoing symptoms. Got to wait several weeks for test result though... I think the arthritis is usually in three or less joints, not sure if it would show up on scan. Have a look here for more info: http://autoimmunityresearch.org/lyme-disease/ Lymes disease can affect any part of the body so can be confused with many other diseases e.g. ME, MS, Lupus, depression etc - need to check for these too if negative. Good luck, feel free to get back in touch if you wish. Kirsty
    worrypot 3 Replies
    • December 15, 2010
    • 07:07 PM
    • 0
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  • I know that my comment is not helpful but i want to say Hello and i am going through the same thing. im 24 and have involuntary muscle movements,muscle pain,sensitivity in my left leg,nerve pain but no back pain and i do have a positive ANA but no Lupus they say its Myonecrosis and sciatica but i think it is something else because i have bad abdominal pain and had my appendix removed last month and also when i have my blood drawn it shows signs of pancreatitis but i do not have that either so i am wondering why my organs are shutting down slowly. i am stuck and confused and the best thing the docs do for me is nerve blocks and pain meds (lyrica150mg&percocet10/325) which helps me get out of the bed and attend life at least. i know you don't like pills but if you just go to your PM appt they will help you with safe ways to pain management because trust me it will save your life. at first i was depressed by the pain now i have a little more hope knowing i can move about. the nerve blocks are good too but they ware off and have to be repeat at least every other month. i get them once a month from PM so hopefully they can help you better than ever...good luck on everything and im praying for your pain to decrease@(=__=)@Thank you, Chan. It looks like I have no choice at this point but to give the PM doc a chance. I'll keep you in my thoughts as well, and good luck to you - I know this isn't any fun.
    Georgiegirl 4 Replies
    • December 16, 2010
    • 09:29 PM
    • 0
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