Can SOMEONE tell me how to get my life back?

After three years of dealing with NHS consultants in the UK, I'm finally having to resign myself to the belief that the only way to solve my health problem is to sort it out myself. But I simply don't know where to start and would like some help.
At the age of 14-15, I was extremely active - hockey, netball, athletics, dancing - but began to get joint pains around my knees so I went to see an orthapaedic surgeon.
After several consultations, he decided I had contramalaciapatella, but surgery was too intrusive then.
The problem was kept at bay until three years ago, before I turned 25.

Now, I have since seen two other orthapaedic consultants, an arthoscopy was done but they found nothing to suggest what might be wrong. Only recently I have been seeing a rheumatologist, but I now feel even they can't work out what is going on. The only helpful comment I seem to recall from one consultant was "well, lots of women have knee problems". As I understand six million people have "knee problems" but no-one has a clue what to do, and no-one seems particularly keen to do anything about it.

There does not appear to be any evidence of arthritis, according to my consultant, it is no longer condramalacia patella, in fact I no longer have a name for it. But it is in the joints, apparently. Unless I can put a name to my problem, no-one seems interested in helping anymore. And I'm only 28.

If anything, my partner believes it is mechanical or structural, maybe something to do with the way I walk or the bend of my spine, rather than arthritis or some form of disease. Coudl this be true?

I'm getting fed up of putting my life on hold and I would like to know if there are any other specialists I could consult.
My knees tend to ache along the inside join of the bone on a daily basis, but the pains, fluid and swelling moves around in that area. My surrounding muscles are weakening, I'm still waiting to see a phsyiothereapist, I get regular shooting pains  somewhere around the tendons, muscles, ligaments and BOTH legs seem to be symmetrical.

Could it be that I need some kind of musculoskeletal expert? Are there such people who can help in the UK? And are there any other support groups who know exactly how I feel because they get just as frustrated with the medical profession?

Any ideas would be greatefully appreciated.

[Kevin Pho, MD]

Hello - thanks for asking your question.

If you have been to multiple specialists, including an orthopedic surgeon and rheumatologist, I am going to be limited in what more I can offer - considering I have examined you nor your studies.  

However, here are some considerations.

If not already performed, MRIs should be performed to ensure that there is no structural damage.  If normal, there are a variety of tests that can be considered to rule out rheumatological diseases.

Rheumatoid arthritis and other systemic rheumatological diseases (i.e. lupus, vasculitis) can all be considered.  A complete blood count (CBC), ESR, rheumatoid factor and/or ANA, plasma creatinine concentration, and urinalysis should be obtained.  Other tests include consider liver function tests, hepatitis B and C serology, and serum levels of TSH, calcium, albumin and alkaline phosphatase.

If those tests are negative, it makes a rheumatologic cause less likely.  If there is fluid present, it should be aspirated.  A tissue biopsy may also be considered to give a definitive diagnosis - although this would be an invasive procedure.  

If all the tests are negative, you may want to consider an evaluation by a physiatrist (a rehabilition specialist) which would give further evaluation in managing your discomfort.  

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.

[kevinmd]

Hello everyone,
I will be away until June 30th.  Have a nice weekend.

Kevin, M.D.

[MattyMatt]

Look for a book called Pain Free by Pete Egoscue.
Get in contact with them and check their website out (I think they're doing a thing in London) Egoscue.com
Let me know how it works. Contact me directly at:
***@****

[JulesBaldock]

Thanks for the feedback.
That's the most help I've had in a long time and I'm now looking into London appointments.

[treestand]

hi jules

like you i was very athletic when in my teens. over the years i had problems with most joints, carpal tunnel, knees, shoulder, herniated disc.

i finally decided that if i did nothing (i.e. remained passive for fear of getting hurt) that i would get worse. so i took up bikrams (hot) yoga, i do it every day. i do not do anything else yet, i.e. i decided that since i have trouble playing sports in moderation, i would just cut it off while i concentrated on this yoga, and add it later.

i feel better than i have in many years, and though i have pain in some joints, it is manageable pain, i.e. it does not scare me and i look forward to the yoga. i just go at my own pace.

i am not sure if this is for everyone but for me it really forced me to face my fears (or getting more hurt) and i decided i'd rather get hurt trying to do something good for my body, than to sit around and wait for more pain.

treestand