Young Adult, Chronic Pain, No Answers...

Training Injuries
61

Today i tried to get hold of my medical records, i went into the doctors and requested them but said it was a “big job” and that id have to pay for them. Ive requested them anyway. I went in makin sure they had sent them to the rheumatology appointment so that i didn’t go there without them. They said whatever they need for the appointment will be requested… I have had appointments before where all the consultant has had is the referal letter, so after asking about it, i’ll be furious if they don’t have what they need.

So all i can get for now is blood test results, the recieptionist said she can’t get my old ones as it takes too long…? Guess if i really wanted some specific ones i could ask for, but Ive had a lot of tests in the past, some i can’t even remember.

Was doing some research last night, and found out that some co-infections of lyme such as babesia can cause Thrombocytopenia, was diagnosed with “chronic ITP” so im wondering if it’s a result of an infection of lyme along with other infections. IF this is the case, i don’t want to be sitting on my ass, potentially getting worse and having permanent symptoms, guess i’ll just have to be patient and wait until my rheum appointment so i know what direction to be headed in.

Litreally, i could talk for days about my problems and am getting tired of repeating myself, where there are so many things wrong, i don’t want to come across as a hypochrondriac, and i need the docs to listen to me and investigate this further, because it’s not a minor problem that i can deal with waiting around, everyday is a major problem and i don’t want this to take any longer than it has to. It needs to be sorted and fixed as soon as.

Im not trying to play doctor but i bet that’s what the doctors must think, they must think “out of work, always something wrong with him, wants his records, get over it”, etc, etc. Everyday, it’s starting to drag me down, i know all i can do is be patient, but i feel if i don’t push this whole situation forward, no one will, the doctors aren’t interested in finding a cause, just thobbing me off with depressants or pain killers, and that’s not solving nothing.

This isn’t a normal life for someone my age. Im getting fed up of having pain killers for breakfast, and this aint a joke, honestly, im tired of it. Everything is starting to become overwhelming, after going to the shops, low back starts hurting after just sitting down, if i sit down with my feet up, back of my knees hurt instead, left eye twitches, it mnust seem like im making some of this shit up.

I feel i have no control over the pain. It will appear when it wants, either severely, or moderate, and is usually migrating, it moves from place to place. Both sides of my ankles, front and back will hurt badly, that i don’ want to put weight on them, then if they ease off, my low back will hurt, surely this is neuropathic? I shouldn’t have to fucking look into it this much, but if i don’t, who will? The docs aren’t willing to, so someone has to take action, i just want my old life back.

I feel why did i come out so bad/wrong? No one else in my family has any medical problems like this, not that i wish they did at all, but i feel why did i come out so bad as a lot of conditions have a heridterary component.
And i don’t want sympathy, im not after that, im just after getting better, kinda wish i had a rash that i remembered to symobilize LD.

Heck i even have a meniscus arthoscopey next week, and if im honest, i don’t know if im going to go through with it because i just can’t keep up with all this shit right now, it’s too much, let alone having my knee oped on. I know it’s best long term, but if im honest, at this present time, i don’t see no long term benefit of getting the knee done, because honestly, i HAVE to get better.

This is a new one, today in my right triep i have noticed, almost a throbbing sensation, like a pulse beating super fast, appears for around 20 seconds then dissapears, what the fuck… Next, this may be well over-anaylyzed, but Ive had instances over christmas where ive had alcoholic drinks causing me severe pain. Ive had not even 2 pints, just relaxing myself, and my head started spinning, and then my nose feels really numb, like if you’ve been to the dentist and had your mouth numbed for treatment, like that, this is all getting too weird for me…

Ive been waiting a long time for this rheumatology appointment, i need to do all i can to get to the bottom of this and im not interested in delaying it, because im pretty much wasting my life suffering right now.

62

Anyone who tells you that your pain is psycho-social is probably someone who hasn’t suffered a real injury or a person that is mentally so off their rocker that they would think that would cause physical pain in other people.

If you are well put together, don’t cry yourself to sleep, you don’t find yourself taking anxiety attacks,you don’t sit there in a depression staring at the wall, then there’s a good bet your pain has LITTLE TO DO WITH YOUR EMOTIONAL STATE.

The fact of the matter is any time you injury your body, there is risk that that pain may become permanent. It is unlikely but you could have ghost pain from having a tooth removed for years afterwards, any injury taken to the body, might not heal correctly, even when it does, this feedback loop with the brain may be altered, in a situation like what happens from central nervous system sensitization.

Most times pain is real, most times it has a physiological cause outside of “hey you have social anxiety and this is causing you to tense up, or messing with your mind” that doesn’t mean any doctor can find an issue to pin-point, though.

63

Yeah, well, welcome to the club. I had chronic pain for years after a pretty rough accident because the pain didn’t go away in the regular course of healing like you would expect, not a doctor tried to help, despite mind numbing pain, nausea from spinal inflammation, puking into a toilet for hours on end because it felt like my spine was being ripped apart. an accident I had from another issues with chronic pain, that made me black out at the top of a flight of stairs. (not to mention i’ve always had bad inflammation)

Doctors made jokes about how much better I looked due to weight-loss from repeatedly throwing up, non stop chronic pain and misery until I ended up de-conditioned like an astronaut. At this point the 1% of doctors that wanted anything to do with me said either I was psychologically a wreck, or the ones that took the time to do a physical exam/tests said I would either need to engage in physical therapy or radical spinal surgery.

That was a long time ago, I took things into my own hands when I started physical therapy with a sledge hammer, and running through pain and sickness. I figured the more built up humans are, the more punishment they can withstand, look at boxers, they go into a ring and take the worst punishment imaginable, and they can walk out.

Eventually my pain went away as I cleared up muscular imbalances, the inflammation died down, my bones grew in response to hard work. Now I try to build myself up as much as I can, so I never get back to that place.

All I can say is don’t rely on doctors, I was starving to death and deconditioned like a astronaut, and still the ones who admitted I was physically ruined from falling down a flight of stairs, didn’t put any effort into actually helping. It’s pathetic.

But some fat piece of shit goes in suffering from diabetes or heart-disease, that’s a different story.

64

Anyway, good luck with your pain, because I still need to exercise a lot to avoid pain, I need to almost constantly engage in these insane feats of physical activity like sledge hammering for hours, boxing hardcore, or running 6 miles a day, I stop for a couple of days and it feels like my body is trying to rip itself apart, like my spine is trying to rip apart.

and building up to that from DECONDITINED like an astronaut was hellish. Running a couple of feat, throwing up do to spinal pain, and then keeping on going.

ON the plus side, my pain is almost always absent, I don’t get sick, etc. I don’t know if a physical therapy program like that would help you, but slowly try to work into one, because it might be the only option or hope you have.

65

I feel im getting new symptoms everyday.

Had a bout of insomnia last night, which seems to come and go, my brother also gets it. However a couple of things may of caused it last night, such as waking up late in the morning, on the computer before bed, and some alcoholic drinks.

Feet aching real bad, the problem is migrating pain, it seems to move, but this is all getting weird, this morning i had pain under my fingernails, almost as if they’d been hit with a hammer.

66

Do you drink tap water?

67

Im fucking furious. Been waiting already long enough for an appointment, and now it has been changed til the end of feburary. It’s urgent as im in pain everyday but they don’t seem to give a shit. Apparently the doctor is on holiday… So now i have to wait even fucking longer, with the possibility of the pain getting worse in the meantime. I could go back to the doctors for some tests, but Ive ran out of hope in them, these so called doctors that are supposed to help you will either say;

“We’ve done all the tests, wait until you see the specialists”

Or if i were to bring up even the possibility of LD, which, IF it is the case, only will get worse unless i get treatment,

“It’s not in this area” OR “the test was negative” - Unrealiable ELISA test.

Just can’t keep up with all this shit and poor healthcare, although i really can’t afford it, might look into going private, because this is daily hell, it’s nothing something that can be waited on.

@steven - yes.

Was considering the possibility of diabetes inspidus, as i drink and pee ALOT, and always have done, might be worth testing for, although it’s not a BIG concern.

68

Ok, another update, seeing as i have over a month til my rheumatology appointment, i would like some opinions and suggestions, i will have to register at another docs soon, but in the meantime, i would like some suggestions on what i can and should/could do because i really don’t want to sit about in pain for another month.

Some days im not too bad, others i am, it’s hard to even remember what symptoms i have at times because they seem to always change. Ive got tests to do for monday, a urea/electroyltes, and blood glucose test - i was tested for diabetes a couple times a few years back, but yesterday i was pissing a lot and drinking a lot with a lot of dry mouth/thirst, today i haven’t been too bad at all. Maybe a imbalance in electrolyes/salts, not sure, but while i feel i need to do the pushing and investigating, it’s not my job to do so, and makes me look like a busy body, the doctors should be doing the work!

Today, badish. Last night i had severe low back/sacrum pain again, managed to get some sleep, but the painkillers aren’t even touching the pain i have alot of the time, so im giving up on taking them… Today, my back has felt stifed up, like the muscles of my back are stiff and tight, and ive had deep aches in my spine throughout the majority of the day, i had a bath with muscle relaxants, nothing. Pain killers, nothing. Got on the foam roller and went for a walk and it eased it. Got on the foam roller again and it has eased it, but easing it has caused the glands at the side of my neck to hurt? Feels like someone has got their hands round them squeezing them. I must ome across as a hypochrondriac with these symptoms, but these aren’t minor aches to ignore, they’re real.

It might be worth me recording my symptoms for a week or two, but seriously, it can be so varied. At times i could have pain in say my ankles, then suddenly it’ll go and my elbows will hut. Then vise versa.

Should i push for lyme testing from the docs? I assume it’ll just be an ELISA test, i might even have to say i got bite/rash for them to even consider testing, im looking into a specialist lab testing, i can’t go on like this and would like suggestions on what to do in the mean time. Im staying as positive as i can, but seriously this is begining to drag me the fuck down.

I have my knee op on tuesday, guess they’ll remove what they can, but even that im put off doing because having to lie in a bed in pain aint motivating, but i guess i’ll have to grit my teeth and bear it for then.

69

Bad imsomnia last night, didn’t get to sleep til about 5;30am, had maybe 3 hours, my body is falling to pieces, i have no idea what things will be like in a few months but this needs to stop.

A few weeks back i was tired alot, snoozing, now im not tired, but instead can’t sleep, whenever i got imsonia int he past it is real annoying, but in a way i thought of it as, i don’t need the sleep, otherwise i would of fallen asleep? So it seems things have changed from needing to sleep, to not needing, this is all just too confusing and overwhelming to e honest.

70

Please see a rheumatologist to be evaluated for Ankylosing Spondylitis. AS is a type of rheumatic disease that usually starts in the SI joints and can affect the spine, neck, as well as many other joints and tendon/ligament attachments in the body. It most often affects young men.

http://www.spondylitis.org/about/ankylosing_spondylitis.aspx

Here are some diagnostic criteria, in case anything rings a bell:
http://www.google.com/url?sa=t&rct=j&q=new%20classification%20criteria%20for%20spa&source=web&cd=4&ved=0CDYQFjAD&url=http%3A%2F%2Fwww.hapml.nl%2Findex.php%3Faction%3Dfile.show%26file%3D1292&ei=4zEcT_HRL6KosQKqkuHaCw&usg=AFQjCNG42RhUchp8yPUfmF5ERm_UgZbLxA&cad=rja

or also

http://www.wjgnet.com/2218-5836/pdf/v2/i12/107.pdf

AS is not easy to diagnose, and the best bet early in the disease is to get an MRI of the SI joints, TO BE READ BY A RADIOLOGIST OR RHEUMATOLOGIST FAMILIAR WITH AS (otherwise it is often missed). Sometimes imaging is negative and the condition has to be diagnosed based on symptoms only.

There are quite effective treatments for the pain and disability, and the earlier these are started the better.

71

Got some bloods done yesterday, more of a routine check but explained that i wanted some tests done in the meantime before my appointment as things were botherin me a lot. Awaiting results, hopefully i can get them in a couple of days but had;

Full blood count + Iron
ESR
Urea/Electrolytes
Liver function tests
Thyroid function tests
Random sugars

72

[quote]ColdFeet wrote:
Last night i had severe low back/sacrum pain again, managed to get some sleep, but the painkillers aren’t even touching the pain i have alot of the time, so im giving up on taking them… Today, my back has felt stifed up, like the muscles of my back are stiff and tight, and ive had deep aches in my spine throughout the majority of the day, …

At times i could have pain in say my ankles, …[/quote]

Sounds like textbook Ankylosing Spondylitis to me.

I was recently diagnosed with AS after suffering for 2-3 years and got significant relief from Enbrel. The new TNF inhibitor medications like Enbrel and Humira often perform miracles.

Hopefully you can get some light thrown on the issue during your upcoming rheumatologist’s appointment. Even if it is not AS, something is obviously very wrong, whatever it may be, so be prepared to look for a second opinion if he cannot make a diagnosis.

Beware of the Lyme quacks - there are many so-called Lyme specialists who prey on people who have undiagnosed conditions that have nothing to do with Lyme.

73

Thanks, 3 weeks until the app, was supposed to go today until it was cancelled. It’s likely the rheumy will consider AS, providing my age. Just hoping for some answers soon as i have the life of an 80 year old right now.

The lyme docs, surely they have a right to provide the right health care, therefore giving someone treatment for something deep down they know isn’t relevant would be risking them their jobs, as essentially it’s malpractice. Guess it doesn’t help with all the controvesery around LD though.

74

This is a stretch but its worth trying. Drink filtered water instead of tap. Your body could be reacting to something in your water possibly.

75

Steven - Any sort of information to read up on, on that matter? Still, i’ll give it a shot.

What i hate the most is the unpredictability, about everything. For instance, weren’t too bad yesterday, walked into shops and all, no problems, today however. Had low back pain bothering me for the majority of the morning, try to avoid p killers, as they seeminly aren’t helping, tried stretching, all sorts. Tried walking it off, which seemed to require more effort than usual, and whilst it eased the pain, as it eased off, it moved up my spine into my upper back. Almost as if my muscles are so tight and crushing my back and that i need to badly crack my back.

This may sound stupid from an outsiders point of view, but it’s very real. I assume if i even spoke about the whole situation to doctors they’d probably think i was a hypochrondriac to some extent or had some psychological issues. I seem to cope fairly well i feel with the pain, for a few days at least, but eventually it builds up and does really get to me that it brings me down, although i try not to let it.

For instance, low back pain, never had any weight lifting injuries or what not, so guess everything is connected, as it’s my whole back and rest of body that will hurt, not just 1 area, but pain killers seem to have a partial effect now, even at times, stretches and things that would relieve the pain no longer do. Back could be fine for up to a week, then start to bother me, and id feel like id need to use a foam roller several times a day, and the muscles on my back feel stiff and almost as though they’re notmoving properly.

Just want to do what i can and try to reclaim some of my life back. Will try get blood results either tomorrow or end of week.

76

Got back from the GP, blood tests were apparently all normal.

FBC - Platelets were “borderline low”, said mine were around 130, and they liked them to be at 140-150, so wasn’t concerned and kept to the explanation of “ITP”
ESR - non specific inflammation marker - Apparently also fine.
LFT’s - Normal
TFT’s - Normal
Random sugars - Normal

So, whilst im pleased there’s no problems there, at the same time, it doesn’t help solve the situation. Overall, he seems to want to wait until the rheumatology appointment to see what they say and i guess to rule out any possibilities.

I did bring up Lyme disease - Done my research, tests, are unreliable, considered “rare”, but from what Ive read this isn’t the case at all.

Anyway, he said ok and started looking through it on the basic NHS page, as it’s not something that is brought up to them often. He read through the page for a while, asked about a rash, which i didn’t have and wasn’t inclined to lying as i feel i shouldn’t have to. But he said himself that not having a rash doesn’t rule it out. From what he read on the page there wasn’t nothing that stood out for him to strongly believe it was LD. At the same time he said he’s not saying it is or it isn’t, but more along the lines of i need to see what the rheumy’s say for him to get an idea of what direction this is headed in.

He brought up the description on the page of the symptoms being consistent with FM and CFS, but really i feel he wants to see if anything else shows up down the line. He said there’s no reliable test, and that it’s a clinical diagnosis which is usually made at specialist labs rather than a primary care practice.

With all this in mind the NHS tests are apparently unreliable, but im glad he didn’t dismiss it straight away like most doctors seem to, from what Ive read at least, anyway. So i guess i don’t have much choice as of now but to bear with it as best i can until i see a rheumatologist.

77

He should have mentioned spondylitis, since your symptoms frankly scream AS or some other spondyloarthropathy (like reactive arthritis). Given the SI joint and spine pain, it is the very first thing he should have thought of. Unfortunately, most GPs know nothing about AS, and many people go undiagnosed for many years (10 years of unnecessary suffering and spine damage on average before the damage gets bad enough to show up on x-ray). This despite the fact that 1 out of every 100 adults have it.

By the way, there are no blood tests diagnostic for spondylitis. Inflammation markers like CRP and ESR are no indication (mine are completely normal). There is a test for an immune system marker called HLA-B27 associated with spondylitis, but again, it is not definitive, and mine is also negative. X-rays are useless in early spondylitis. The best bet is an MRI of the SI joint with contrast injection.

I am not a doctor so don’t get worried based on what I am saying, but based on your symptoms, at the very least you should be evaluated for spondylitis. If the rheumatologist doesn’t mention the possibility himself, you should ask him about it. If he says something you know to be wrong, e.g., that your blood tests or x-rays rule it out, look for a different rheumatologist.

Don’t get hung up on Lyme. It is much less of a problem than the internet hysteria seems to suggest. The tests have a very high rate of false positives, so many people are told they have Lyme and put on long term antibiotics, etc., unnecessarily, by unscrupulous doctors, thus preventing them from being diagnosed with what is really wrong.

78

[quote]seekonk wrote:
He should have mentioned spondylitis, since your symptoms frankly scream AS or some other spondyloarthropathy (like reactive arthritis). Given the SI joint and spine pain, it is the very first thing he should have thought of. Unfortunately, most GPs know nothing about AS, and many people go undiagnosed for many years (10 years of unnecessary suffering and spine damage on average before the damage gets bad enough to show up on x-ray). This despite the fact that 1 out of every 100 adults have it.

By the way, there are no blood tests diagnostic for spondylitis. Inflammation markers like CRP and ESR are no indication (mine are completely normal). There is a test for an immune system marker called HLA-B27 associated with spondylitis, but again, it is not definitive, and mine is also negative. X-rays are useless in early spondylitis. The best bet is an MRI of the SI joint with contrast injection.

I am not a doctor so don’t get worried based on what I am saying, but based on your symptoms, at the very least you should be evaluated for spondylitis. If the rheumatologist doesn’t mention the possibility himself, you should ask him about it. If he says something you know to be wrong, e.g., that your blood tests or x-rays rule it out, look for a different rheumatologist.

Don’t get hung up on Lyme. It is much less of a problem than the internet hysteria seems to suggest. The tests have a very high rate of false positives, so many people are told they have Lyme and put on long term antibiotics, etc., unnecessarily, by unscrupulous doctors, thus preventing them from being diagnosed with what is really wrong. [/quote]

Cheers for your input. I don’t doubt what you’re saying, i was extremely concerned myself, 3-4 months ago and i convinced myself that i had AS. I brought it up to several doctors and other healthcare professionals (no rheumy’s - yet), and they all dismissed it. Trust me, i was convinced, i had spent about 6 hours or so of a day looking up page after page, and i thought, this is it. I eventually got out of that and don’t believe it so much now, but given my age, of course im sure the rheumy will consider it. She apparently has a special interest in AS and is a member of one of the societys so i hear, so im sure she’ll have to consider it.

I did have an MRI of my lumbar spine, which came back ok, reduced lordosis, i thought - early signs? Then the docs dismissed it and said just because my lordosis is reduced means nothing, mine might be more reduced than what is “average”. I also got tested for the HLA gene, didn’t get the results back, if it were positive or neg, all the docs wrote next to it was “normal - no action”.

At least im hoping the rheumy will consider a lot of possibilities when i see them, i need this shit over with because im wasting my fucking life at the moment. Im doing nothing with it, im bored shitless and im tired of feeling like a beat up overweight bum.

Today has started to drag me down, not much pain, but my back and neck muscles are real stiff and it’s fucking annoying. Can’t go on like this, it’s so hard to suffer it for now, but long term, don’t know if i can…

79

This is getting unbelievable, i want to fall asleep and not wake up until 2 weeks time so i can get on with this appointment, because im just plain existing at the moment and everyday is fucking shit and misery. It probably sounds depressive, and it is, but it’s hard not to be.

The muscle stiffness is unbearable, un-fucking-bearable and im getting really tired of it, one area seems to MAGNIFY big time, for instance, last night i was having pretty bad pain in my right shin, where it attaches to my knee, bone pain, no apparent reason and it lasted for around 4-5 hours, pain killers did absoulte shit so i kinda gave up on taing them. Eventually when it went away my right knee was really hurting big time, i blanked it out as best as i could but it was bothering me, but i thought it could be mechanical related as im having some issues with that knee so didn’t think much of it.

But for now the biggest problem is hte muscle stiffness, i can’t even sit down without my back aching because of it. And i can crack my back by pulling my arms back, probably every minute. It’s ridiculous.

80

Everyday im starting to wonder why im even bothering waking up and i really need to consider something to pull me out of this hole, because honestly, i just can’t deal with it anymore.

I can’t be waking up to this anymore, my body is falling apart and pretty much killing itself. Throwing up my guts and being tortured from inside. My spine feels like it’s being pulled out of my back, i can’t even move my arms without them cracking and snapping. Whenever i try and take a deep breath to relax myself my upper back snaps loudly, my body is too stiff to move properly.

I just have a real feeling of isolation and loneliness here, that i don’t belong here or in this family, they’re all abc healthy and fine, which of course im pleased and happy about, but then there’s me, pretty much falling apart. Im here alone again as they don’t really know what to say to me and vise versa, which i understand, i just don’t know what to do, but hearing “go to the doctors, your appointments soon”, yeah it is, but it’s no miracle, i figure im getting really worse and im struggling to function big time through the days. Im left with a life indoors as a hermit, achieving nothing and being unable to do routine jobs without feeling like my body has been through a major car accident.

And to think 1 year ago i was lifting heavy weights, running every other day, it makes me feel physically sick to my stomach. And this all seemed to start, 3-4 weeks after a 3 week holiday, just doesn’t make sense to me. Anyhow, thought id update this for what it’s worth.