Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; When people dont believe you. Bit of a rant.

Seb, Sorry to hear about your pain.
When I could not breathe at night and the pain seemed unbearable, a dear family member said to me "It's not about you." This message brings a tear to my eye when I type it. For me, AS gave more than It took away.
This dis ease can be overcome. Willpower is the least effective tool. Some would call on faith. This is not the way for me. I trust in the self when I am not in fear. That is when to fake it. Those around me can love me just the way I am if they chose. If not, they can fake it.

Do you like biology?

Thanks for all the great support and messages. I only just got back from peer support training camp.

Peer support is when the oldest students at high school help out with the youngest kids who are knew to high school (year 13's assigned to a class of year 9's). Personally, my first year of high school was probably one of my best years ever. I loved my peer supporters, and this is why I decided to trial to become one.

I'd love to reply to all of your messages individualy but I think it would take quite a while. the thought of going back on a really strict NSD and eating eggs for breakfast (something that made me feel quite sick) kind of scares me so I havn't really been doing anything apart from taking medication when feeling bad.

I was just wondering if anyone has problems with their hands? I hate it almost as much as the back pain. Is there anyway to reduce pain and stiffness in my hands? As well as sport and stuff I do like video games. But im finding it difficult to play with my friends anymore. Just typing this message is hurting my fingers bad.

Once again thanks for all the replies

sorry for the late response.

Hi Seb
Nice to hear from you.
Great work you are doing with the youngest kids at school.

I know Donette has terrible trouble with her hands.

Take care and keep in touch

Seb, I soak my hand in a basin of hot water. That helps the pain more then anything else. In the mornings, I wash the dishes by hand, rather then put them in the dishwasher. The hot water feels so good and it helps with the stiffness.

like donna, when my hands are medium bad, i find the hot water to help a lot. i do the dishes at home and i am the dishwasher at work / in the lab.

i also have a paraffin wax bath that is like a little luxury. i use it most mornings when i first get up, even before i hit the shower, and just before bed. i have it on the bedroom floor, not far from my bed. its not essential, but it is nice. i dip my feet in it and my hands, really gets me going in the morning, nice way to end the day.

when my hands are worse, contrast baths are even more effective for me. 1-2 minutes in very cold water, ice cold, as cold as you can stand comfortably; 1-2 minutes in very hot water, as hot as you can stand. back and forth for about 15-20 minutes. several times a day.

there are also a number of things i do to save my hands when they are bad. limited typing: only for work, no forum, no facebook, no computer games, etc. no video games. limited book reading, as turning pages of the book flared the tendons in my thumbs. had my students staple their papers on the opposite corner to normal as my left hand was worse, all that paper turning made my thumbs worse. no cutting with scissors, electric stapler instead of manual, ergonomic hole punch, ergonomic mouse instead of the touch pad of the laptop, ergonomic computer keyboard, hubby did most of the peeling and chopping in the kitchen, no pipetting in the lab, just really limited my hands, avoiding all repetitive tasks. but that's because its my tendons, more specifically where they attach at the bone (the entheses) that become inflamed for me.

that's how it was from about 1998-2003 and again 2006-2008. and occasionally since then. its odd, the first two places it all started for me was in my hands / wrists and in my upper back / neck. and the hands were absolutely horrible for those first few years. was honestly afraid i'd lose my job over them. but then they got better and now they are mostly not too bad too often. but when they go through a short flare, resorting back to all i learned in the beginning very helpful.

not sure if it was just time or if the muscle relaxant helped keep the muscles from pulling on the tendons because it was really once i started taking the muscle relaxant that my hands slowly resolved.

you probably don't have to go to these lengths, but all these little things do help.

even now i only use gel ink pens, no ballpoints. and the easiest, smoothest to use, IMO, are those by uniball.

if i'm mindful of my hands, they are pretty good these days.

Seb - what kind of pain do you have in your hands? My RA gives me pain in specific matching joints on both hands, for example the middle knuckle of my index finger on both hands. The joints can be swollen and warm to touch. I also get very stiff joints so when I wake up it's hard to straighten my fingers out. They want to stay curled up. The stiffness eases as the day progresses.

So far, the only thing to help my hands is the same drugs that help the rest of my symptoms - currently I'm taking methotrexate and prednisone. At the moment, they are much better.

My brother has the same problem and if he knocks any of the affected joints while he's at work it causes him a lot of pain.

Only people know about my AS is pretty much my immediate family and some of them like my uncles do not even know and my gf knows about it obviously and she has fibromyelgia.

I try to keep it to myself at work but it is very hard and i feel alienated at times. We get lunch catered and i have to say "eeeh im not hungry" or "i already brought lunch" because i am tired of having to explain people starch will put me in pain. It's very hard when i'm traveling and i have to be the picky one all the time.

Sometimes we have long meetings and the longer i sit without movement is more stiff my back gets and i have to get up and stretch or i miss a day or two sometimes when i go into flares and people do not believe i can have back problems because i am too young. They are like "too much fun at the bar last night ?"

I am surprised my parents are very supportive of my diet. They actually somewhat on the diet with me because they realize it is good for people without AS as well.

I just find it unnecessary to go around telling everyone what i have and %95 of the population wouldn't know what AS is what it does to you anyways and i don't want people to feel like oh yeah he has some kind of a disorder or sickness .. poor guy. Being a guy and being raised as such i feel i have to keep to myself and be tough. Though it's hard when you are constantly in pain

I'm the same way at work, sit at a desk most of the day. The nurse where I work has been very supportive of my AS ... and our cafeteria has great choices to eat healthy ... so I am thankful for that.

Most people know I have "back problems", but same as you, if I miss a day here and there people comment on it. I don't even bother explaining to them what the disease is, because I don't feel like answering the plethora of questions that follow, I usually just tell people I have a bad back. It's probably not the right thing to do, people should be educated on it, for me though its just not worth it.

Try not to alienate yourself though. I have found that joking around (when appropriate) and enjoying work time makes the disease easier to bear. Again, I am fortunate to have many good friends at work, one who even picks me up before work when I had epidurals done!

Wendy, in response to your question .. I just get stiff joints in my hands making it quite difficult to move them freely. Its really not a big deal though. I dont think mine sound as bad as yours, hope it doesnt cause you too much trouble!

Thanks Goz and Phil. Good to hear ya stories and opinions! :-)

That's a sign that eggs are bad for you, despite not being starchy -- skip the eggs if you go back on NSD or LSD. In particular, go light on egg whites; egg white protein is tough to handle for most people with gut problems. It is very high on the list of common food sensitivities, along with wheat and cow milk. My digestion was feeling terrible within a week of eating multiple eggs every day, and later on a food test showed I've got egg white sensitivity. Egg yolks don't seem to be a problem.

Hot flaxseed cereal with butter and raisins makes a much better NSD breakfast that won't make ya feel sick