PLEASE HELP ME! 23YEARS OLD, 12YEARS WITH UNDIAGNOSED BACK/HIP PAIN!

[jane_pain]

Hi there,

I am 23 years old and have had chronic lower back/hip pain for around 12 years now and i still haven't got a diagnosis. I have had every scan/xrays/treatments there is going, but everyone single one has shown nothing that is abnormal. The pain is mainly on my lower back, hip and groin area but i also get pain in my neck, have swollen knees and ankles. I have tried most pain killers and i am now taking morphine in tablet form and also liquid morphine, and at such a young age i worry how long i will have to go on without an answer and taking such strong prescribed drugs. I have seen so many doctors one that recently told me he had done everything he could and there wasn't anything else he could do and to "just get on with my life!"  (Which obviously i am, or i wouldn't be here today! I try and exercise daily and go swimming when i can. I have also managed to get my self a degree, i'm not sure how but i am very proud of it.) However I am really depressed and i need an answer, i need to know what my future holds, i can't be on morphine all my life and not know why... even if there isn't a cure, i  just need a diagnosis. I'm always looking for suggestions to go back to my doctor and ask about to try and find a diagnosis, so if you suffer from something similar i would be really grateful to hear from you!!!

[jane_pain]

Hi there,

I really appreciate you taking the time to post all of that helpful information. I have never heard of Lyme Disease before but from looking at your symptoms list i do actually have majority of them, i would say 3/4's of the symptoms which you have listed i have.

However i'm not sure that a lot of the symtoms are due to my strong medication i am taking, things like, bad sweats, dizzyness, tiredness, lack of concentration, upset stomach, mood swings etc i just simply put it down th the side effects of the morphine. My main agony is in my lower back, hips,groin and buttock area, i can cope with the rest of my symptoms such as swollen knees, ankles and feet. But if you think there might be the smallest of chances that this is what could have i will certainly look in to it even more and make enquiry's with my doctor. How long have you had this disease, i have had my pain for 12 plus years now. I know it sounds silly but are you born with it? What tests to they do to find out if i have it or not? I have recently just had a full blood test that looked at everything.

Thank-you so much again for any infomation i really appreciate it and i am open to any sort of suggestions!

Kind Regards x

[Tuckamore]

Hello Jane,

Welcome to the Pain Management Forum. I am sorry to hear about your undiagnosed pain. I am glad that you took the time to post. Please forgive my tardy response I have been having some computer problems.

It sounds like you are satisfied that your physicians have done the appropriate testing   .....but still nothing!!  So if it is not the testing are the eyes that are reading them not seeing something? I am not familiar with your countries health care delivery system.  If you have not been evaluated by a multidisciplinary team of astute specialist at a large teaching hospital/clinic I urge you to request a consult.

Twenty three is far to young to live with undiagnosed chronic pain. Please do not give up. Be assertive and insist on answers. Maybe they need to start over and begin with the very first test and continue through to the last. Sometimes it can take awhile before tests are positive or conclusive. I do know how frustrating it can be searching for a diagnosis.. With every test you are hoping desperately that they will find something almost anything...yet afraid that they will.

I don't know if Lyme's Disease is a possibility as suggested above...but I do think that nothing should be dismissed without a thorough testing process. that positively eliminates it.  Every possibility should be explored. So please get those fresh sets of eyes and keep searching.

I hope that you will let us know how you are doing. Feel free to ask additional questions. And if you are so inclined please also feel free to respond to other threads. I will look forward with interest, to hearing from you again

Take Care,
~Tuck  

[bcb1200]

Hi...have you considered lyme disease?  All of your symptoms could be lyme.

Here is a message I sent earlier to someone else.  I would really get it checked out. YOU CAN GET WELL WITH PROPER TREATMENT!
____________

Have you considered Lyme disease?  I had all of the symptoms you had and was told for months that it was all stress, in my head.  I was told to seek therapy and go on Prozac.

See the symptom list far below.  (This is only some of them...there are really more than 70.)   You don't need to have them all.

The key to getting diagnosed properly is the doctor.  I had a terrible time back in Feb-April of 2010 with weird symptoms, dizziness, anxiety, forgetfulness, brian fog, twitching, jaw pain, slurrred speech, etc, etc.  I had dozens of tests, including a lyme ELISA test...all normal.  I was told it was stress, that I had a somatization disorder, and told to go on Prozac and seek therapy.  I"m only 35!  

I then found another doctor who happened to be an ILADS trained LLMD (Lyme Literate MD).  She did a Western Blot test from a lab called Igenex.  I came back highly positive for lyme and some "co-infections" (Bartonella and Babesia.)  I never had a rash nor do I remember a bite.  Lyme is in all 50 states.

I'm now in treatment and am 90% better!   I have a few more months to go. All of my anxiety / brain fog is GONE!  

Just a word of caution...lyme is very controversial.  The mainstream doctors and infectious disease guru's deny that Chronic Lyme exists and feel it is easy to diagnose with good tests and easy to treat with 2-3 weeks of antibiotics.   This just isn't true and there have been no double blinded studies to show that lyme is eradicated from the body with a short course of antibiotics.

This is why you need an ILADS trained doctor.   You can go to their website and download Dr. Burrascano's treatment guideline.  It is the "bible" of lyme.   Regular doctors will say these aren't symptoms and that it is in your head.

Not saying you have lyme...but anxiety is a common symptom.  I've met people who've been told they've had ALS, Anxiety, Fibromyalgia and Chronic Fatigue for 10 years when it was really lyme.  They got well once going to an LLMD and getting proper, agressive treatment.

Check out the documentary Under Our Skin (google it).  There are also clips on youtube.  You can probably rent from your local library.

You can get well!  lymenet is a good resource also.

Cheers

Lyme Disease Symptoms List
1. Unexplained fevers, sweats, chills, or flushing
2. Unexplained weight change--loss or gain
3. Fatigue, tiredness, poor stamina
4. Unexplained hair loss
5. Swollen glands: list areas____
6. Sore throat
7. Testicular pain/pelvic pain
8. Unexplained menstrual irregularity
9. Unexplained milk production: breast pain
10.Irritable bladder or bladder dysfunction
11.Sexual dysfunction or loss of libido
12.Upset stomach
13.Change in bowel function-constipation, diarrhea
14.Chest pain or rib soreness
15.Shortness of breath, cough
16.Heart palpitations, pulse skips, heart block
17.Any history of a heart murmur or valve prolapse?
18.Joint pain or swelling: list joints_____________
19.Stiffness of the joints, neck, or back
20.Muscle pain or cramps
21.Twitching of the face or other muscles
22.Headache
23.Neck creeks and cracks, neck stiffness, neck pain
24.Tingling, numbness, burning or stabbing sensations, shooting pains
25.Facial paralysis (Bell's Palsy)
26.Eyes/Vision: double, blurry, increased floaters, light sensitivity
27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
28.lncreased motion sickness, vertigo, poor balance
29.Lightheadedness, wooziness
30.Tremor
31.Confusion, difficulty in thinking
32.Diffculty with concentration, reading
33.Forgetfuiness, poor short term memory
34.Disorientation: getting lost, going to wrong places
35.Difficulty with speech or writing
36.Mood swings, irritability, depression
37.Disturbed sleep-too much, too little, early awakening
38.Exaggerated symptoms or worse hangover from alcohol

Symptoms for Bartonella and Babesia (common co-infections with lyme)

Bartonellosis symptoms:

Common symptoms of bartonellosis include:

___Fatigue (often with agitation, unlike Lyme disease, which is more exhaustion)

___Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus"

___Sweats, often morning or late afternoon (sometimes at night) - often described as "thick" or "sticky" in nature

___Headaches, especially frontal (often confused with sinus) or on top of head

___Eye symptoms including episodes of blurred vision, red eyes, dry eyes

___Ringing in the ears (tinnitus) and sometimes hearing problems (decreased or even increased sensitivity - so-called hyperacusis)

___Sore throats (recurring)

___Swollen glands, especially neck and under arms

___Anxiety and worry attacks; others perceive as "very anxious"

___Episodes of confusion and disorientation that are usually transient (and very scary); often can be seizure-like in nature

___Poor sleep (especially difficulty falling asleep); poor sleep quality

___Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations)

___Muscle pains especially the calves; may be twitching and cramping also

___Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis)

___Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc.

___Tremors and/or muscle twitching

___Heart palpitations and strange chest pains

___Episodes of breathlessness

___Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins

___Gastrointestinal symptoms, abdominal pain and acid reflux

___Shin bone pain and tenderness

------------------------------------------------------

Babesiosis


As with other co-infections, there is a lot of overlap of symptoms between Lyme disease and Babesiosis. An accumulation of the following signs and symptoms probably warrant testing and/or treatment of Babesiosis:

___Chills

___Fatigue and often excessive sleepiness

___High fever at onset of illness

___Night sweats that are often drenching and profuse

___Severe muscle pains, especially the large muscles of the legs (quads, buttocks, etc.)

___Neurological symptoms often described as "dizzy, tipsy, and spaciness," similar to a sensation of "floating" or "walking off the top of a mountain onto a cloud"

___Depression

___Episodes of breathlessness, "air hunger", and/or cough

___Decreased appetite and/or nausea

___Spleen and/or liver enlargement

___Abnormal labs (low white blood count, low platelet counts, mild elevation of liver enzymes, and elevated sed rate)

___Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)

___Joint pain (more common with Lyme and Bartonella)

___anxiety/panic (more common with Bartonella)

___Lymph gland swelling (more common with Bartonella and Lyme)

[carly62]

Hi Jane-I'm sorry for your pain and frustration; I know it's draining. I too have had chronic back/hip pain for almost 30 years. I don't know how the medical community in the UK is compared to the US, but I have found MD's to be very reluctant to tread in any waters where they are not specialists, afraid of making an error and getting sued, I think!  What has helped me most is finding practitioners who specilize in treating pain. One is chiropractic. They do a pretty thorough exam, x-rays, etc, and they may see something your MDs haven't as they are educated differently and have a different point of view than MD's. I  find them to be more holistic in their approach, recommend diet, vitamins, exercises that an MD never considers.  The other thing is I got a referral from my MD to a pain clinic, where they did a very thorough work-up, MRIs, physical exams, and I got a diagnosis They are very careful here about prescribing narcotics unless they can fully justify it, as the regulatory agencies are VERY strict about pain clinics not catering to drug seekers. The pain clinic offers epidual steroid injections and other non-narcotic treatments that help, and they also prescribe pain meds. The warning here though is that they ARE very careful about prescribing narcotics, and here they will cut your dose if they feel it is too much. If that should happen to you and you can't deal with the reduction I guess you could just drop the pain clinic and go back to your original MD.  Both my chiropractor and my pain clinic MD agree with my diagnosis and their treatments compliment each other. The benefit here with both of them is they specifically want to treat pain and are more educated in it's cause and in the variety of treatments. I hope you are able to get some relief and satisfaction, maybe find an alternative treatment that helps as I did with the steroid injections, and can cut down your narcotic use. One more suggestion from sad experience; if your pain isn't too bad at times, try to go without your morphine for just a little while, since the more you use, the more your tolerance builds. I'm trying to wean my use of oxycodone and hydrocodone right now, very slowly, and when the pain isn't too bad. But as I said, my best help has come from people who are specifically dedicated to treating pain and nothing else. Best of luck to you.