Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group i feel like i'm going crazy.......but i'm not!

Beautiful, Joanne, it is wonderful to talk to our new friend about such things, and hear your story!

When I return home later, after 6 hours of recording boxing punches and fight sounds for a TV show, will want to continue this!

Talk about "crazy Western" "work work busy busy shop shop bang bang" ha ha!

thank you for sharing that.

maybe one of the biggest challenges is to still experience those things but not "step out of" society to do so, but to find a way to go through it, surrounded by the "noisy" people, managing a career with many needs, especially the needs of others. and then there are people in the world that must deal with poverty, infectious disease, starvation, war, how do those people "maintain a sense of serenity"?

i could quit my job and have my husband work, and he agreed to do that if i had to go on disability; we had that very serious conversation last year. however, i want him to be able to do his gardening and painting, i don't want him to have to sit in front of a computer, that is not good for his back and neck, or soul, he doesn't enjoy it.

i on the other hand, love being a professor: i like teaching others, mentoring others, and research is like play to me: the saying "they pay me to do this?!" comes to mind. but, it is busy, it does involve catering to the needs of many.

when my back got really bad last fall because i sat in the car too long, then used those same muscles to hold the phone in one position for too long (now that that same muscle or tendon is torn, i can feel, just like with the rotator cuff, that raising my arm up over my head from the side makes it worse), i had to stop going in (i was on sabbatical just doing research, so i could tell a white lie and stay home and instruct my research students via the phone (i bought a headset) or email) and only went in when i absolutely had to.

after 3 months of going to PT and doctors, realizing that all the PT was doing was ultrasound which i could do at home if i bought a home machine, which i did, and the doctors, some trying, some not, were not helping me at all, so after 3 months, i quit them all, including the acupuncture, and just stayed home and took care of me, for another 3 months. others urged me to go to doctors, continue on that quest, and i said "no, not now, i must heal first." and they didn't understand how going to the doctors to seek out a diagnosis and healing were incompatible, but i think you can from the way you write.

when i flare, i do temporarily stop and take care of me even better than normal, maybe its why in between my flares i am not so terrible, unless i tear a tendon or ligament, then i have bigger problems to tend to.

but not every one can quit their job or even want to quit their job. and yes, if we have to, we have to: last year when we talked, it was clear we'd have to sell our home and move into a much smaller place with no land, land that gives us much joy. but you do what you have to do.

however, i'd rather find a way to do all the things you describe, and still be able to give back to the world using the gifts i was given. science and math came easy to me and i always wanted to do medical research to give back to society. once i trained in science, learning how to do research, it wasn't until i got my first faculty position that i realized an even more meaningful aspect to my job is the teaching and especially mentoring of young people. it would be a shame for all involved if i had to stop doing this which i love and which i think i'm very good at. and having something to be so focussed on definitely takes the focus off of my pain.

so, most of us must find a way to do as you described without stepping away from society. when i'm home alone with my husband, my bird, our beautiful garden, and all the nature and wildlife that surrounds our home, with all the time in the world to take a walk, take a bikeride, sleep as much as the pain allows, do all the things that are relaxing, it is easy. the challenge is to still be able to do these things while we maintain our jobs. or find a way of remaining calm while driving 20 miles on a sheet of ice to get home from work in the winter while sliding all over the road.

so, its a matter of balance. balancing our careers, the people in our life, our health needs, etc.

thanks for sharing. i'm so glad you were able to do this for yourself. i think there are a lot of good ideas there.

Oh no Sue, do not leave your job, I would never have left mine had I not had to. Oh no, that is not what i mean. Looking back on my post I can see that could be how it sounded, but really I do not think anybody should leave their job just because i did. And believe me I did not go gleefully I was furious!!!

I think more what i am saying is that although i know my pain is amplified by my over active nervous system, the fact that my nervous system is over reative is not to do with my state of mind (although it is today, because today i am feeling bonkers, but thats another story LOL) the point i am making is that is we are not careful we can sometimes easily allow crazy stuff in on our lives when we do not need to and this in turn can overwhelm our nervous system

Years ago I had no skills, no skills at all for dealing with stress. And because i had no idea why i was so poorly and because, as you know this illness in itself can be so stressful I got in a real muddle. the muddle in my life became bigger and bigger, and the burden of this muddle antagonised my nervous system and could well have played a big part in my illness developing as it did.

I had no skills, and i carried a lot of resentment and shame because i was ill and nobody would help me and on and on that story goes. but I was lucky because eventually i did find some good folk that helped me, and it is the same here, there are even more folk helping me once again here

I think what i am often thinking, when i hear folks stories that they are going through the same torment with misdiagnosis that I often go through. And that I also percieve folk are being down trodden like i was so sometimes i offer my information, and perhaps this is not what is being asked for

I do not think people have to be suffering to the extent that I was, and sometimes still am, to take advantage of the stuff I have learned, but perhaps sometimes i do not explain clearly enough what i mean

I have read several of your posts and they have been very helpful for me and I feel that you are a very spiritual person, and I guess that is why i chose you to share with. Rather than me thinking that you should leave work or indeed do anything I say, I actually feel it is your shares that are helping me

I guess there could have been some confusion in the communication because i was sharing my experience, but to be honest rather than sharing it, I have all along been more interested in listening what you have to say. Your shares are very comforting and inspirational, and I have got more out of them than I have from many other sites that i have been to

I really do not think you realise just what a good writer you are and the positive impact your shares do have on newcomers. They certainly help me. Believe me Sue, I am not trying to impose my way on you, rather it is the other way around I am trying to absorb some of your success. I already new before I shared with you, from reading your previous posts, that you are clearly a very balanced person, and indeed this is what attracted me to sharing with youi the first place

My respect and love to you

Joanne

hello again,

i think i might have miscommunicated here. i knew you weren't suggesting to quit working. i was just saying that we should still do all that you are doing, even if we are working, but at the same time, its more of a challenge to fit it all in, but, its important.

and thank you for your kind words, but you too are an inspiration, not just to me, but i can tell from others' comments, to others as well. i am enjoying so much talking with you!

i can also tell that you have found a lot of things that have helped you so much, and you want to share these with others, to help others out. i know how enthusiastic i get when i finally find something that helps, i want to shout it from the mountain top. i think it is wonderful how much people here want to share what works for them, in hopes that it might help others. that's one of the really nice things about this place.

Hi Sue,

Sorry to hear you are suffering so much I have suffered from panic attacks for years, so know what you are going through. Panic can be brought on by a lot of things, in my case it is stress, but pain can also bring it on.

Have you tried doing Yoga? It is very good for relaxing the body, and may also help with your AS symptoms. Deep breathing is another option. When I get really bad, I need valium to releive the symptoms, but this can't be used too often; luckily I only need valium about twice a year, and for a couple of days only.

Please mention this to your doctor, I am sure he can advise you on things you can do to releive the symptoms There are also a lot of websites out there offering advice on how to cope with panic attacks, they may be of help to you. At the end of the day you need to get rid of the pain, but I know this is easier said than done! Can you get an appointment with a pain management expert? Sure they will be able to advise you.

All the best!

thanks emma,

last year i tried to explain this to several doctors, including my physiatrist in the pain center (a pain management expert). when i asked what to do about it, all i got was a "yeh, pain can do that to a person." at least my suspicions were acknowledged instead of them treating me like a crazy person, but no suggestions on how to break the cycle.

deep breathing, imagery, and meditation do keep my conscious mind calm while this is all going on, so not a panic attack in the classic sense. though i wonder if the drugs that help classic panic attacks could help here, something to investigate. just wish the doctors had been able to say, "yes! i know exactly what you are talking about! and this is what you can do to ease it!" you'd think pain doctors would be more familiar with this and know how to address it. maybe i just need a better pain doctor?

ultimately i had to find physical methods to alleviate the pain. so far, that's the only thing that has worked on the physical symptoms though the other calming techniques at least keep my conscious mind calm.

what i really want to be able to do is to find a way to affect the subconscious or unconscious mind and the sympathetic and parasympathetic nervous systems because that's what seems to go into hyper mode. hoping i'll get some perspective by reading the "explain pain" book dow told us about recently.

Hey Sue,

Know what you mean about Dr's responses to panic/anxiety attacks! Two Dr's I saw refused to believe I had panic attacks, because I had chronic diarreah (according to them this is not a symptom; I hate to disagree as I don't have a medical degree, but having researched the subject, it is a symptom!), and they also refused to give me vallium, even though I only wanted 2 days worth of tablets, and very rarely have to take them

My other issue was that my panic attacks lasted days, rather than minutes (the classic panic attack). I think this is because I learnt to control my breathing so I didn't hyperventilate, but my stomach completly shuts down when this happens, so severe nausea, diarreah, and impossible to eat. It's part of the bodies fight or flight syndrome; in the stone ages, if an animal was looking at you as food, the fact you are throwing up and defecating puts them off!

One Dr prescibed me beta blockers, which slowed down my heart rate and lowered my blood pressure. This actually helps a lot in the early stages, and may be something your Dr would be happy to prescribe? Could be worth you noting your heart rate and blood pressure when this happens, so you have a record to show the doctor? If you haven't got one, blood pressure monitors are relatively cheap to buy these days, and are as accurate as your Dr's. As I think I said before, when it is bad, vallium is the only thing that will "cure" it, and usually two to three days low dosage (2-5mg) is enough. I've done all the "mental" cure bit, as in coming to terms with what is upsetting me, and realising it is just a physical response, but my body just doesn't seem to listen to my brain! Most panic attack experts say you have to do the worse case scenario bit, i.e what's the worst that could happen if my fears come true, and realise it's not that bad, but once you're body is in charge rather than your brain, it's a vicious cycle to break In your case, as it is pain rather than stress that causes this, it is even harder.

Many Dr's also don't appreciate how bad panic attacks can be, and think mind over matter is the cure. For some people, this can work, but for a lot of us it doesn't. You really need to find a Dr that is sympathetic about this, and is happy to prescribe vallium in small doses. Not easy, but can be done!

I really feel for you, know exactly what you are going through, and how horrible it is. A lot of people think you are weak if you let stuff like this bother you, they don't realise it is a pyshical response rather than a mental response. Unfortunately you have no control over how your body reacts to stuff If you were allergic to a food and had this response, they'd understand!

In your case, I don't think the classic pychiatrist would be able to help; you don't have an unfounded fear, it is a response to the pain you are in. You are not crazy, your body just can't cope with what it's going through, and this is it's response.

I really hope you can find a sympathetic Dr. All the best!

Emma.

thanks emma!

it does sound like the same thing. mine only last til i lower the pain, thankfully i can do that with an icepack. soon as the ice hits it, the body starts to calm down.

i do have a BP monitor and that was the first thing i tested, but my BP always stays low. thought it was just a pounding heart, but the heartrate tonight while just laying on the bed after taking a shower, nice and calm but feeling pain since i was laying down without any ice and my pulse was 88, then 83, so high. then i did some deep breathing and was able to get my pulse down too, even though the heart still pounds. i'd hate to add yet another drug like beta blockers if i didn't have to, i feel like i'm already on so many drugs. and when i get the pain to die down, all the other symptoms go away, so i've been focused on treating what is causing the pain, trying to get at the source of the problem. though if i could use my mind to do it, well, i'd like to try that too.

valium? i could ask about that. thanks. like you, i'd only use it in an emergency situation. especially since i take a muscle relaxant at night. certainly wouldn't be mixing those drugs. i wanted my physiatrist to write me a prescription for a pain med, even tramadol, just for emergencies, when my SI tweaks to the point of making me scream, but she said i'd have to come in like that, she'd have to see me like that, i told her i wouldn't do that to myself, but got the rheumy to prescribe the tramadol for emergencies, then went on LDN and it became a moot point. don't know why so many doctors let us suffer in pain when there are things that can help us. i know addiction is a scary thing, but so is severe pain. anyway, that's in the past.

you're right, i hate to use the word panic attacks as then people think its a scared, nervous, fear thing. and its not. not even a little bit. its a pain thing. maybe the brain is involved, but its a response to pain. and not even an emotional response to pain. even when it happens, i don't feel worried or scared or anything like that. that's why i say its almost like an out of body experience.

i do think i will start trying to talk to my doctors about this. surely one of them will be familiar with it, you would think? maybe a psychiatrist that deals with chronic pain patients? i just don't know? but somebody must be familiar with it.

and yes, the GI tract. last year the pain was so bad, that my GI tract was screwed up enough that my body stopped digesting food properly and i dropped almost 10 lbs as i watched food go in one end and out the other (no, not a pretty sight!). the gastritis was the worst in the morning. i've had almost 20 years experience managing my gastritis so during the day i could feed it, give it ginger and mint and psyllium, but at night when it would get empty, that was the worst. mylanta right before sleep was the only thing that truly saved it from getting any worse than it did. but it was a rough month. and surprised the doctors didin't understand the pain - GI connection for you; its one of the major problems with burn victims, its a well known connection. interestingly, my doctors thought that maybe the GI symptoms came first (IBD) and then the musculoskeletal pain second. i let them test me for IBD, figured it was about time for another colonoscopy anyway, and i do have gastritis which then leads to IBS anyway. and it was a good thing that i had the colonoscopy as they removed a few polyps and saw some ulcers in the small intestine, common for people with spondyloarthropathies, and figure that data will help me with a dx. but now that i'm going through a milder version of last fall, i can see its pain first, followed by GI upset. interestingly, at the start of this flare i had the worst case of constipation, all the fiber and water and exercise in the world wasn't making a dent, the only thing that was saving me was psyllium. now with all this pain, now my bowels are showing that my body is once again not digesting food all that well, not as bad as last fall, but still, not great. so yeh, i know exactly that which you describe.

sometimes you feel like a nut, sometimes ya don't.



it's why the have mounds.

thanks ben!