Well, it took me a little less than a year to post here since discovering this site the first time, so I have some catching up to do, in all fairness. I feel like I know a lot about you guys and none of you know me, so here goes. Oh....and strap in...it's gonna be a long one.
I am, as I stated new to the site as a member. I've been reading a little longer
So first things first. Nice to meet you all! -I'm a 36 year old man (although I still feel more comfortable with boy than man, but thats just how I roll)
I live in Scandinavia. I'm married for one year now, although we were engaged for 7 and living together for 8. She is the love of my life, and I treasure her and our 4 year old daughter. I work in high-tech industry full time, and I love my work. I have a ton of good friends, and I really do mean good friends, the kind that would bust you out of jail by force if you even hinted it was needed. They have been proven good friends through rough times. So I'm fortunate in so many ways.
And I don't feel bad about it either tbh, I somewhat think I deserve it, there has been times when everything was the complete opposite.
Well..anyways, I digress, lets get back on track.
I have no diagnosis. Or rather I have one, and it's not at all related to arthritis of any sort. I'll get back to that.
But I do suspect AS. I have for a little less than a year now. My suspicion grows stronger by the day, and I cannot sit and not dare tell anyone about it anymore.
So I lay my case before you (hey that sounded very attorney like), I know you are hesitant to do patient to patient diagnosis, but I need some input and feedback. You guys are close to an AS supercomputer in my eyes, and no wonder. Patients will usually have a better and deeper understanding of an illness than a doc can a lot of times.
I'm scrathing my head here trying to come up with a way to tell you how my pains and sympthoms gets me to land at AS, because if what I suspect is right, really is, then I have packed away symptoms for years and years under my current diagnosis. And that means I have to rethink a LOT. Luckily/unlucklily for me I have a memory of the rather sticky glue kind. So bear with me when I try and sketch this out.
Ok..let's see..I'll start with my current diagnosis, that I am now starting to doubt was ever right.
I went for a year of mandatory army service when I was 20. I had no prior history of serious sickness of any kind. I actually enjoyed the army a lot. (ok a year was a bit longer than needed, but I still found it a great place for experiencing new things and made good friends.) I'm an anti-air man btw. I had no fear of flying, and regularly flew back home for leave. Even so, on my way back home for leave in the last three months in the army, I was on a commercial jet. It was a two hour flight and as I often did, I fell asleep.
I woke up midflight, bent forwards sleeping (I used to be able to sleep in ANY position the human body could possibly find itselt in :p) -And there it was...it felt like my chest was...well light in a way, and as I could feel myself breathing in, but it just felt off in a weird way. I actually panted for air for a few breaths, but calmed myself and finished the flight allright. Coming of the plane I felt ...well off too. I'd describe it as dizzy or unbalanced.
I got home, but within a few days I had the same again. and after that I had repeated attacks. Things got worse, or at least not better, but I finished the military service. Got admitted to a army hospital once, he looked me over fast and gave me what I later realised was a Valium, wich helped so he checked me out with no further comment. Another thing that started just about the same time was I got a "clicking" sound in my ears. Almost like the one you get when you swallow, only a lot and all the time.
When I got back home I had planned for a year off, but I kept getting these attacks. My mother got me to a medical specialist in internal medicine. He ran an extensive blood test to check for cancer, then he concluded on anxiety, and prescribed Sobril (similar to Valium somewhat). Now this was excactly when the new "pshyciatric wonderdrugs" started hitting the market, and he was hellbent that this was the answer to all my problems, so in addition to Sobril he prescribed Xeroxat. I started that one...and things went straight to h... . (pardon the language).
I should mention ( I think it may be relevant) that during this period I joined an anxiety treatment group. About 12 people and 2 pshyciatric nurses. The only problem was, they focused on confrontation therapy. You know how most people with anxiety has it phobic? -meaning their anxiety will manifest in special places or circumstances, like a mall or open square, or wherever else. Well most anxiety cases are like that. They can lock down an attack, at least the panic attacks to being triggered by event or place. So confrontation therapy
actually puts them in that situation and lets them experience an attack, and see that they do not actually die from it,or whatever their fear is. And for me....it did nothing. Nothing whatsoever. My anxiety was "irregular" in the sense I would have bad days, during wich I could do nothing. And I'd have good days when I could do anything. Nothing in particular "triggered me". So I wasnt excactly feeling right at home to be honest.
Instead of having a moderate attacks over prolonged periods of time (days even) before starting Xeroxat...they were now still there although a little weaker, but in addition, I would get terribly strong attacks of shere terror. Imagine the feeling you would get the very second you saw a kid run out in front of your car, and stretch and magnify that feeling to last all day or more. Still, I stuck to the docs advice (give it time, it takes 3 months before blood levels allow it to work properly.) Until I one day had an attack so bad I ended up in an emergency room, where the resident doctor told me this was scary and he wanted me to quit Xeroxat cold turky, even though that is not what is advised. He had read reports of people reacting badly to it.
So I quit, and the doctor that gave me the Xeroxat switched me to one called Cipramil. same bad reaction. And then another doc told me Cipramil was almost identical to Xeroxat. That time I made the descition and quit. So the one thing left that I had that helped a bit was Sobril. For a while. But I had to take more of them over time to get any effect at all. The body gets used to it so so fast, and needs more and more. Finally I was in such a bad state of anxiety that I voluntarily admitted myself to a treatment facility.
And there things got better finally. It had been almost a year since I had my first attack, and I would stay there for 8 months. Usual treatment was 3 months, but since my illness puzzled them and I was so young they decided to let me stay longer. Luckily, for it was a really good time. You learn a lot about yourself in a place like that. And you learn a fair bit about medicines. Patients there could inform me the withdrawal sympthoms for Sobril are little more than a perfect copy of an anxiety attack. Sweaty palms, rapid heartrate, trouble relaxing, muscle cramps, you name it. The institution I was admitted to had a very clear view against all medicines of the Valium kind for this very reason, and so I quit with their help. Instead they would focus on natural calming herbs and tea's, aroma massages (For 8 months I had 3 sessions of one hour of that each week....my body never felt so good as during that time). So I managed to quit the medicines that certainly werent helping me.
Even so, they felt I made slow progress. So they sent me to a national anxiety specialist center. The guys with the best know-how in the country apparently, to confirm or deny an anxiety diagosis. After filling out forms with well over a thousand questions, the result came back as "Psycosomatic Panic Anxiety disorder"
I'll expand a bit on that. Psycosomatic more or less means mind and body. And so it was in my eyes. I would never start feeling fear or anxiety. I would start feeling odd sympthoms from the body, and THEN these would make me anxious. So they concluded I had a form of anxiety that makes the body send out all kinds of wrong signals.
And It most certainly did. The anxiety from before the meds had me feeling like balance and the sensation of breathing was off. Kick in the meds; and sweaty palms, terror attacks, stomach problems and at one point even a flaming hot rash all the way up my left arm that suddenly appeared, all were my joyful companions. Oh and aching jaw from time to time.
Based on that conclusion, the Psyciatric doctor that ran the institution felt I needed medicines of some kind. I refused completely any more "wonderdrugs", so she persuaded me to try an older, well proven psyciatric medicine. Anafranil this time. Now she warned me this one was hard on the side-effects while you stepped up the dose to reccomended blood value. And boy was she right....
I lost nightvision for a month. Completely. I could not go out a dark evening even, I would be blind as a bat. Anxiety level peaked. Sweated lots. Oh and as a sideeffect I gained a (for a 20y old) quite exciting stamina sexually. Orgasms took literally hours. (sry about that, it really shouldnt be said, but hey, I'm telling you all tthe other fact :p)
And then it smoothed out...over a long long time. Medicine and therapy (mostly the physical therapy, the other therapy sessions wasnt doing a whole lot for me) gave me my life back. Slowly. Ever so slowly. Regular day/night rythm, and eating regularly helped too. I was afterall a 20y old and have always been one for the nighttime.
Eventually after 8 months, I was more than ready to leave and did so with the blessing of the staff.
I felt sympthom free, and I kept being so for...well I guess it must have been about 8 years. Had a partiulary stressful time at work, and suddenly the dizzyness returned. and tiredness. I'd say fatigue, but I know you use that word for something very specific. I was on sickleave for 14 days, then returned for work and symptoms dwindled over the next months.
Then I had a few minor episodes where It felt like I was able to control it a lot better at once it set in.
Fast forward and we arrive at last autumn;
This is where it gets interesting btw, sorry about the boring so far
I was fairly new at my job (I have been there for a little over three years, and it is very skillheavy, so it takes a long time to learn.) Around summer vacation we had an insanely steep increase in workload. Not easily compensated for due to the long training time, meant we worked a lot of overtime. Actually so much we had to start running a 3-shift, as compared to our earlier 2-shift. I switched to 4-shift, meaning I work day one week, then night, then evening w/extra Friday, Saturday, Sunday ...and then 4th week free.
I felt tired a lot, but I'll come back to that. I also noticed that I was getting hurt when sleeping in anything but my expensive bed. Sleeping on the sofa would mean I woke up with a killer neck pain, each and every time. We had planned a holiday to Egypt. Just before that holiday I was sooo tired and run down. I had felt some sort of stiffening in my left side or hip-area for a good while, and one day a week before the holiday I just broke down. Completely exhausted I started crying in front of my wife. I felt so so tired, and it felt like something was wrong in my left hip as I stated. More precisely; on the very top of the bone you can feel above the hip in your side and somewhat right of it. Stomach wasnt feeling all that good either and I cried to her how tired I felt and that I worried it may be cancer. I went to the doctor and he quite assuredly told me I was in all the wrong places (age, weight and so on) for stomach cancer.
So we went to Egypt as planned. And I remember a weird feeling I had as I stood on the top of the plane stairs when we arrived in Egypt, when the heat hit us as we were leaving the plane...it was as my whole body was...well still and quiet sort of. Very relaxed.
We had a marvelous week there. Absolutely faboulous. Two days before heading home I woke up at night with a stomach flu. Shaking with fever and a good old holiday diarrhea. Wife, always the careful planner had brought pills for that, that were meant to "stop" it. I took two and then one more each 4th hour as prescribed, and I actually had no more problems before we got home. Same day as I got home, it started up again...and whoa; that one kicked! -I was flat out for 8 days, had to run to the toilet every 7 or 8 minutes, and nothing but water stayed down. I lost 6kgs in one week. Couldnt even go to the doctor, was too scared I would have the runs on the way over
And then...
That stomach flu felt like it affected my whole system. For a few days I would feel a searing sharp pain in my lower abdomen if I tried to "push" to relieve myself. The whole hip area felt sore (and I mean the actual bones). And it went on for weeks. I got another doctors appointment. He refered me to a naprapat (cross between chiropractor and physical therapist, not sure if you use the same word?). He worked on me up until christmas time, without any big difference felt. Then a week before christmas at a session I complained about a restless shoulderjoint (I've had those before, it's like I can not find a relaxing position for the joint it feels sore and tender in all positions.) He used some acupuncture with amazing result, and also cracked my neck.
Now, I've had chiros do that to me before and never a problem, but just a few days after that, it felt like what I had had in the hip area started to quiet, and started hiting my head and neck. I have had a lot of tension pains and headache before, and this just feels so different. It was a kind of constant pain, that non-prescrition medicines did nothing to. I cant describe it any other way than having a toothache in my neck (very high up, one of the top joints) and in my temples, but high up , where I couldnt really feel any muscles. (Wish my English was a bit less rusty, so I could describe it better
) It well...literally feels like it isnt muscles hurting...but bone or tendons or whatever. Just not muscles.
Oh..and my jaw was worse than ever. I have plastic thingy I sleep with so I wont grind my teeth to bits, had it for a few years, and even that didnt do the trick much. I have had to "crack" my jaw open by applying a lot of force bending it sideways for years. Now it even gives of cracking sounds when I open my mouth after not talking for a while.
And it went on and on and on. I had a few good days once or twice in the period from January to June. The good days lets me know it isnt cancer or anything I'll die of. (yes the idea does cross ones mind) The bad ones....well. Tired, feels like such an effort to work hard. The only thing that actually helped were excersise and warmth. And a constant pain. Always there.
I've been atletic in younger years, but I always HATED running, and now....a good run where I work up sweat leaves me feeling like I'm on a wonderdrug. Like I am high and well....painless withouth ever noticing that a general pain had been there.
Long hot baths and showers make my general level of comfort skyrocket.
The problem with the excercise bit is its such an effort to get out and do it. It saps my energy even thinking about it sometimes. The problem with warm showers is....well running out of water, and getting to work in time
Oh, and last but not least.....weather affects it. In a big way. Not every time there is a weather shift, but if I am extra bad some day, you can bet your life there is a rainstorm or coldfront coming.
I even had a very interesting episode. After a day the jaw was extra bad, and I moved it around a lot, suddenly it felt like something liquid in nature just loosened inside my right ear. And that triggered what I for 15 years have considered massive anxiety attacks. Dizzy to the point of almost hard to walk, very nasty feeling indeed. But I wasnt scared. I was just too tired to be scared I suppose. So I experienced a supermassive anxiety attack quite calmly and with some interest. For the first time ever.
And yes.... I was in constant contact with my doctor. And I wondered what the hell was wrong, and what caused the pain. So i thought; can it be arthritis....at my age? -Isnt that only for "old folks"?
So I started looking up arthritis on the net, and whammo; I stumbled across AS. And it fit so damn well. It fit with everything I felt. It was like I finally had some kind of explanation. And I actually went to the doctor and asked him to specifically test for the HLA-B27. And he is a good guy so he even ordered an MRI of the SI joints. And to be sure I had no sinusitis, he also had a CT scan done of my sinuses. The problem is, that the gene was negative, and the MRI came in a short while ago and are negative as well. And the sinuses ofc showed no sign of a problem. So I'm left feeling too stupid to talk to the doc again.
And then suddenly....it quieted down. I was myself again and I am now too, but I do feel stings of the neck and temple pain, but nothing like it was for 6 months.
Now...there is a few things I havent told you, that adds to my own beginning belief it must be auto-immune of some sort. It would be nice to have some feedback that'll tell me if I may be on to something or not.
Remember when I told you it started onboard a flight in the army?
We were on an excercise for 2 weeks, a month or so before that flight. It was constantly limited sleep and hard work...and winter, so very very cold. I drove a tracked military vehicle, and about a week into the excercise they found me...engine running, parked against a tree (armored vehicle so not much damage to it) unconsious. They managed to wake me and I screamed from an insane headache. I was admitted to a field hospital, and my fever was so high for 2 days, they woke me every half hour to monitor me, and had a helicrew stand by to medivac me if I got worse. (I was sporting a 40,9 degrees celsius, they had decided if it moved 0.1 up they had to do it, but wouldnt before as they were worried I wasnt stable enough for transport.) At least thats what I was told later. However....they could not tell from their tests if it was a virus or bacteria since none of those tests were conclusive. (they concluded with fuel poisoning during filling)
As a teenager I had inflamed heelcaps. I remember it vividly, it got me the most expensive jogging shoes in the store, by doctors orders
It could be unrelated alltogether, but I thought it worth mentioning.
My jaw has always been the most troublesome during my periods of anxiety attacks (sounds natural, you get more tense if anxious, but then again...could it be the other way round?)
For quite some years now, I get the worst pain in the ancle joint when walking fast or for long periods. both sides, but not in the back of -or under the foot. It's in the front part of the joint.
For 5-6 years now I get red rashes on my arms in autumn and winter. They are circular to some extent, red, dry, scale a bit if I scratch. about penny-sized and very marked. Asked a doctor once, and he said it was age-related. (For pete's sake I'm only 36!!! :p) They do not ooze btw. And I do get sores in my bellybutton from time to time, but those ooze if I scracth them.
My father...wich has visited a doctor about once ever before he hit 60 went on medical leave 50/50 for a year. He complained about complete exhaustion. He said he went to bed feeling exhausted and woke up more exhausted. He has complained about his back and neck for years, but he did have a very physical job. So they thought it was his heart, and checked it in every possible way without finding anything. Finally after a year the doctor more or less told him he could not justify keeping him on medical leave anymore. So in desperation my father says; "at least do an x-ray of my back it hurts so much". They did, and then he got called back to the doctor, wich quite embarassed told him "his lower 4 disks were powder, you are going to get disability now, no problem" We do have a high pain threshold in my family, thats for sure
Thinking back, this did not start last autumn. It's been working its way up to the level where I could no longer just do what I had trained myself to do for so many years; write it off on anxiety and shun the doctors as much as I could (they couldnt do much about anxiety either way, and I hated what some of the medicines had done to me early on)
But that stomach infection...it DID do a nasty number on more than my stomach, I'll swear to it.
And that leaves me with a whole lot of questions; what of all I have thought was anxiety related and shrugged of, could not have been?
-Oversensitive nerves in the chest area (T-shirts would feel like bricks) at some times.
-Random pains in the chest at times. (just short bursts, and from different places to be honest.
-Feeling that I could not get heat in my body....for days on end.
-The complete opposite, where I would feel like boiling. Very much in the back area.
-Cramps in my back and neck.
-Winter leading to pain and tension, where as I used to love winter and sport in the winter.
-and more I suppose...
Interestingly parallell to all this happening, in february, I had a physcial check at work. (mandatory). Everything was normal, bit high cholesterol, otherwise fine.
But the respiratory test was NOT good. Apparently the exhale part of it. So they got all worried looking, and told me this might be smoking related and they have a name for it here; KOLS.
So they got me dead scared and they ordered a lung x-ray. Well, what do you know, it was flawless. So I got the old "we do from time to time see this result in perfectly healthy people, although we do not know why. Even some athletes have it. You have nothing to worry about, heart sounds perfect and lungs do too, and those look perfect as well"
Problem is...I am fairly certain that whatever my companion in pain this fall was, it will be back. And then what do I do? -No diagnosis, no medicines that help.
I can handle a lot of pain as long as I know it's not killing me *grins*...but I worry if it can get worse and cost me a job I love and an income we depend on.
So...am I complete nutcase? -I can tell you what I do know. I know I have anxiety, but did it come first or did something else? (and certainly the initial medicines I was put on made it a hell of a lot worse)
And I know anxiety...it does extreme things to you. What it does NOT do is chronic and strong pain for half a year.
I'd love to know what you guys think, and dont be afraid to be honest, I can handle it, trust me on that
I'm so so sorry for every typo and misspelling and whatever else. I'm not too strong in English these days, and while trying to remember all the facts at the same time, it probably leads to a badly worded story. I'll keep it shorter and better written from here on
gilth
(Oh and I dont blame anyone if they gave up reading. Way way too long, I know.)
