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Back, knees, ankles, sciatica, tiredness - & more - no diagnosis - ...
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Back, knees, ankles, sciatica, tiredness - & more - no diagnosis - Help!

Hi there everybody! This is my first post here and I am searching for answers to my multiple health problems which are ongoing and have been ruling my life for years. I am a 29 year old male. I will write all of my symptoms, with some background where appropriate, and I will try to make it as coherent and relevant as possible.

Thanks in advance to all who reply!

Normal things which cause me pain:
Sitting cross legged on the floor / pain in hips, ankles, sometimes knees.
Waking up in morning / stiffness, back muscle pain, ankles, standing, walking, shooting leg pain (now intermittent).
Stairs / knee pain (weak and clunky), ankles (painful, tight, especially inside posterior tibial tendon).
Standing on tip toe / ankle, foot pain, toe pain, arches.
Bending from waist / shooting pain in left leg, hip pain, lower back pain, mid back stiffness.
Sitting in chair / back pain, stiffness, shooting leg pain.

More:
Toe Pain / always bent, can't straighten, rub on shoes.
Finger and wrist pain doing normal activities / press ups or yoga, using hands and fingers to give a neck or back rub to partner, applying pressure in any similar way or using hands for a period of time like a screw driver or computer mouse. (not a very long period of time like 6 hours, just more than a few minutes)

Wrist: Sometimes very bad pain in tendon which runs over wrist bone. It clicks/pops over the knobbly bit when I rotate my wrist.

In Bed:
Back Pain / lying in bed, sitting up in bed, difficult to get comfortable ever, lower back pain and mid back (feels like muscle) pain.
Hip and ankle pain when lying or sitting in bed. Ankle pain is often worse (or more irritating) in periods of inactivity (unless bad enough to stop me from walking/jogging)

Tiredness:
Even after 10-12 hours sleep find it difficult to wake and get up. Never feel refreshed. If I get up too early (ie 8am) I need to nap by team time or earlier a lot of the time. If I don't nap and struggle through it rally is a struggle. It makes me feel like I cant keep my eyes open by 8pm. I also end up feeling hungover, headache and feel sick (if I don't nap). Most days I end up sleeping in til late so as I can function mostly normally for the rest of the day.
Difficult to fall asleep at night.

Toilet:
Need to urinate all of the time. Eg. 4 times between getting in bed and falling asleep. And then at least twice per night wake up and go to the toilet. Plus 10 or more visits per day. (For example, today I went out for a coffee. I went to the toilet twice before I went out, twice while at the coffee shop (despite trying to hold it), twice when I got home. All in about 3.5 hours. I got in bed at 9pm tonight. It is now 2230 and have been to the loo for a wee 3 times)
I quite often find I have diarreah (diarrhea) and at other times constipation.This has largely subsided in recent weeks but had continued for many months.

Running and Walking: Difficult because of knee and ankle impact when running. Ankles roll in a lot but are partly corrected by custom made orthotic inserts.

Infrequent headaches. Probably a normal amount but I thought I would include in case it is relevant.

Touching chin to chest: Causes a massive amount of pain at times. Not in neck but in mid back area. So much so that I can't hold my chin on my chest for more than a second. This pain comes and goes. It can last for most of a week and then subside for a week. It is a fiery, crawling pain.


***********
History

Had shoe inserts since about age 12 due to ankles rolling.

Diagnosed with sciatica age 23 after onset of severe back pain after doing sit ups. MRI scan revealed swelling/touching nerve. Eventually given epidural injection. Pain disappeared from right leg but came on fully in left leg after injection. Doctor decided not to go down that route again as he thought it didn't work. Referred to pain management who basically told me to exercise. I feel that the clinic was aimed at people who get a bit of back pain and then stop doing everything. I go jogging, swimming, yoga, stretches every day, sit properly in chairs etc, work on core and so on. I do everything that I can.

I know my back pain is worse if I do too much or too little. Sometimes it gets so painful that it is difficult to carry shopping or get something out of the oven. At these times I do light stretching on a yoga mat.

The pain has been with me non stop in my back for nearly 7 years. It has ruined my life. I left university 3 times purely due to not being able to attend. I have quit various jobs as I can't predict the pain. I am now trying to do football coaching and refereeing but I am being severely held back from progressing as I can only manage a couple of days per week and I need  the other days to recover.

My GP and other doctors all seem to have the same reaction. It is as if, because I look healthy and try to keep fit, they see a young ish, healthy man come into the surgery and think "ah well, it can't be that bad then".

I need to do something to fix this as I am still out of work, I struggle to sleep every night, I hobble around every day and I just can't get anyone to listen to my symptoms properly or take it seriously enough to see it through to the end.

Pain Killers:
I still take 4 tramadol per day and Ibuprofen regularly. Have done for years. Probably addicted. Pain is worse when I miss a couple of tramadol.

Family history of arthritis but doctors keep telling me I am too young to worry about that and it must be something else but they never say what it is. Two of my cousins on my mums side, both younger than me, have been diagnosed with arthritis. One of them is in a que for a hip replacement at age 25. The other is in constant pain and is on strong tablets to get relief. My mums brother has had his toes straightened surgically because they became so twisted and bent. And my mums sister is in her fifties now but is crippled with arthritic pain to the point that she wears special shoes and has been suffering for over 15 years. When she was 29 (like I am now) she had barely any symptoms or pain, certainly not enough to significantly affect her life at the time.

I would really appreciate some help or advice on either what to say to my GP, how I can help myself, who I could o should be referred to, if the various symptoms are likely to be related, what you think they could be either individually or collectively, is it normal to have all of these quite painful symptoms in my twenties when I attempt to keep fit and healthy?

Many Thanks.
    

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9 Comments Post a Comment
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Avatar_f_tn
Wow you have a lot going on!!  You are young for arthritis but it happens.  I was young when mine started.  I had a strong family history of it as well.  They can't rule it in or out without x-rays.  Have they ever been done?

I think a pain management group would be your best answer for helping your pain but I think you need an actual diagnosis.  I think a rheumatologist may be helpful in sorting things out.  It's clear you have sciatica but your other symptoms don't come from that.  (Though new imaging testing would be helpful.  It is possible that over the years you've gone from a swollen disk to a herniated one.)  There are other ways to treat sciatica than one type of injection.  I think a pain clinic would best help with that.  Either that or a neurosurgeon.

It's possible you have some type of autoimmune disease going on.  All the joint pain you have could be part of that.  A rheumatologist can take blood and look for specific diseases that have those types of symptoms.

It also could be that you have a few different things going on.  Sometimes it's hard to sort things out.  It doesn't sound like your GP is really aggressive in getting to the bottom of this.  Maybe you need to look for a new one.  Mine is excellent at dealing with what she can and referring out for other things.

As for the Tramadol, yes, you are likely physically dependent on it.  It may be that after 4 years you need your dose changed, especially if you have additional or worsening pain.  It could also be that Tramadol is not the best medication for you.  I tried it years ago and while it worked okay for pain, I had side effects that I found intolerable.  (And Tramadol should not be stopped abruptly; it needs to be tapered off.  The withdrawals from Tramadol can take a while and be difficult.  It has an antidepressant aspect to it that makes it hard to come off.  Though if they switched you to a different med you may not have to taper.  I'm not sure of that but a good doctor will know how to handle it.)

It's unfortunate that the fact is if you're young and look healthy you're not taken as seriously.  (This also happens a lot if you're a woman.  Many doctors try to tell women it's emotional or they need to see a psychiatrist.)

I hope you get some more answers from someone that may have additional ideas.  For now, I hope you'll ask your GP for a recommendation to a rheumatologist.  I think that's as good a place to start as any.
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Hello Fern,

Welcome to MedHelp's Pain Management Forum. I am so glad that you found us and took the time to write such a good, detailed post. However it saddens me that at such a young age you are in so much pain with no real diagnosis. My heart goes out to you.

Where to start?? You have so many things going on! Because your pain and limitations are so wide-spread this sounds more like it is a systemic condition .... as you suggested, an arthritis or something similar.

Some things that also come to mind are Fibromyalgia Syndrome or  Chronic Myofascial Pain Syndrome. These are not just a catch all terms for those with pain that a diagnosis seems elusive. Fibromyalgia is a specific, chronic, non-degenerative, non-progressive, noninflammatory, truly systemic pain condition. This from a trusted site: " People with both FMS and CMP face more than just the two sets of symptoms of both conditions. Today, a few researchers are realizing that FMS and CMP not only occur together – they reinforce each other."  So I would discuss this possibility with your physician.

If you haven't had extensive lab tests, (blood analysis, testing) I would certainly request repeats or more searching for such things a Lupus.   Lupus is an autoimmune disease characterized by acute and chronic inflammation of various tissues of the body.

Has Lyme Disease been ruled out? This can be difficult to diagnosis as all tests are not accurate and need repeating.

CFS (Chronic Fatigue Syndrome) is also something I would want considered if I were in your position.

Of course as you suggested RA may be a possibility but there are inflammatory conditions that mimic Rheumatoid Arthritis. One of those conditions is Ankylosing Spondylitis which is a chronic inflammation of the spine and SIJ. There are just too many possibilities to list here but I am sure you understand what I am suggesting

If your current PCP is unwilling to continue to investigate your symptoms I encourage you to find a physician that will. I find physician's associated with a large teaching facility or with one of our national clinics to be very astute and on the cutting edge of medicine. That's not to say there are not a lot of good physicians that are not in these positions, there are! It just seems that they are more interested in solving a complex and/or difficult to diagnosis patient. So don't be dismissed. Be assertive and insist on answers

I hope you'll keep us posted. I'll look forward to your updates. We understand the frustrations of searching for a diagnosis. I wish you the best and will be interested in hearing about your progress.

Take Care,
~Tuck
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Avatar_m_tn
Hello. So many thanks for taking the time to read my extremely long post and also for taking the time to get back to me with detailed replies.

I will do my best to keep you posted on what happens. My GP has just refereed me (after 20 mins of back and forth and him telling me to take more painkillers) to a podiatrist to have a look at my ankles and shoe inserts.

I am seriously considering changing my doctor though for a fresh start. One of the main things that bothers me though is that I fear they will not be able to get a good grasp of my history over the last few years. I am in England and we tend to get 5 mins with a doctor if we are lucky... To try and get a full story across or get a referral you have to be literally walking in with your head chopped off to get anything done.

I am going to have a look at some of the conditions you mentioned, which I have heard of before, to see if I can recognise any further symptoms.

Thanks again.

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Avatar_m_tn
I have read through tens of pages of info on the conditions you mentioned.

I feel as though Ankylosing Spondylitis is the closest match to me at the moment. As I read that one I felt as though the entire article was about my symptoms. Especially how difficult it is in the mornings.

Thanks again.

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Avatar_f_tn
Well, a podiatrist is a start, though it's not where I would go.  Tuck had some other good thoughts.  I would certainly bring up ankylosing spondylitis when talking with the doctor, though also keep an open mind about other conditions.  If they're taking blood, they may as well check all the conditions you can.  Though fibromyalgia doesn't have a blood test.  It's more of a rule out diagnosis and they have certain things they check in making the diagnosis.  And sometimes something presents a little differently in some people.

The main thing is getting a proper diagnosis so you can move on and start having it treated.  It could take a while.  You have a lot going on and some things can be difficult to diagnose.  I hope you're on the right track and that someone will come up with something definitive for you.  I think that's the worst part at times, knowing there's something wrong but being in limbo about exactly what it is.  I hope you get some relief soon.  Keep posting and let us know what's going on.
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Avatar_m_tn
Update...

I am still not having much success with Doctors. My podiatry appointment is in January so only a couple more weeks.

I have seen 3 different GP's since my last post. They have all said pretty much the same thing and each time I come away feeling that they are not interested. I know I am not being forceful enough about getting it sorted. But it is also annoying to see a new doctor each time as there is no consistency.

The last doctor I saw said there is nothing he could really do and it is just an unfortunate fact that I would have to get used to it. Surely he is not qualified to make such a sweeping and damning statement about my health - can he? He has not even blood tested me or anything?

I explained to him how I was at the gym last week and tried to do a particular gym machine (the one where you are seated and spread your legs outward and then back in again). Beofre I went on the machine an old lady of 71 was on it. She had the weight on 55. And she did 3 sets of 10. Then I went on and I could not do any at her level. I ended up doing one set of 8 reps on weight 10. 45 less than the old lady. - and the doc reckons it's "just one of those things"...

No way!

Anyhow, I'll update every so often in case it helps anyone else out who is going through similar.

Thanks
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Avatar_m_tn
Hi

I have Ankylosing Spondylitis and it sounds like that.
Same problems as you have, and it took them 10 years to diagnose me.
Its not nice, Ive lived with it for 10 years now,although was born with it, it dosent seem to show its face until your near 20.

Do you walk with a slight curve on your spine??
If you havent already got one get yourself a really good matress memory foam makes sooooo much diffrence.

This disease can be picked up on a normal x-ray mine was after everything else was done to me!!

I now take humeria and its changed my life, Inject once every 2 weeks in the stomach.

Its depressing i know what you mean,But seriously it does sound like it.

cheers lee
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Avatar_f_tn
I feel your pain. I am 28. I have severe numbness and tingling in my right leg all the way down to my toes and up into my shoulder and arms. Sharp pinching and heat that occurs all over the body. Extreme fatigue. Swelling in the stomach and sooo much more that I won't get into. When I go to the drs they look at me like I'm crazy when I ask them for MRIs or cat scans and always say I look fine and am too young so they aren't worried! Really?? I've given up on switching drs and going to ERs. My only faith is in god because people just seem to not care. How can You be a Dr and not want to find the source of a problem. That's like a mechanic just looking at an engine and being like "well it looks fine!" I feel your pain. Sorry, I hope you find answers.
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Avatar_f_tn
And I know this is an old post I was just reading through and had to say something because I know what its like and I feel where you are coming from. Again, I hope you have found answers.
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