friends with autoimmune issues?

serenityfrye

I am looking to find some friends who also have autoimmune problems (I'm still seeking diagnosis but hashimotos runs in my Family) - people who can commiserate with the fatigue and joint pain and flare ups. And if anyone has advice for staying on track on a bad day (or weeks). Thanks!

GaleHawkins

@serenityfrye the autoimmune problems are tough on many levels. I have Ankylosing Spondylitis (AS) and another family member has Lupus. My AS has deformed my body so people are like OK he must to been in a bad car wreck (I hear that over and over). Whereas with Lupus you may feel like you have been in a car wreck but look fine so people still make unkind remarks about you not being as active as others, etc.

I feel much better after giving up sugars and grains a year ago at the age of 63. While that managed the pain OK and cured the IBS, etc things still are not perfect but much better.

Not so much now but a weather change due to a low pressure system still drags me down. I try to just rest more but life often does not corporate. I think women with kids have it the worse because of the demands on them. A demanding workplace can be an issue for all of us still working.

I do a lot of goggling and keep trying to learn more. I research a lot of things that get posted on MFP that are new to me. I am learning diet does make a difference in how I feel in my case.

serenityfrye

Agreed. I'm permanently off gluten and dairy and am working to quit sugar and it's stemmed my worst symptoms. I still get hormonally induced flare ups though and am pretty useless for one to two weeks per month. Which makes keeping up with a workout schedule hard. And yeah it's rough when you feel miserable but look perfectly fine so everyone assumes you're just lazy. Brain fog is real

bmskid

Hello! I was first diagnosed with Hashimoto's Thyroiditis at age 12. I have had it so long that I don't really know what "normal" feels like, so I don't know how it affects me, activity wise. Over the last year I have had a roller coaster ride of trying to get a diagnosis for another obviously autoimmune issue. It's most likely lupus, they say, and we are just waiting for more symptoms to rear their ugly heads. I try not to let it get me down, but I can definitely relate about the "look perfectly fine but feel awful". When I force myself to be active even on those tough days, I do tend to feel better than if I just chill out. Some days, there's no option: I have to chill. But I do try to keep those at a minimum. I have no special diet for the autoimmunity, and I don't intend to consider that any time soon.

MarziPanda95

Hello! I have two autoimmune diseases. Alopecia areata and ITP, though the latter has now been listed as 'treated ITP' since I've been off medication and fine since February! If you didn't know, Alopecia is where my immune system attacks my hair, making it fall out. ITP is where my immune system is attacking my blood platelets, meaning I couldn't clot properly and was very bruised and admitted to hospital.
I don't personally subscribe to the theory that diet can cure or change an autoimmune problem though. There's no reliable research stating so, so I'll stick with what works - medication. I tried diet changes when I was younger and they didn't make even a shred of difference. Autoimmune diseases come and go. I first got alopecia when I was 7, and my hair has fallen out and regrown twice since then. No diet changes. Just time and medication. Most people who experience and improvement after diet change would have seen the improvement without it because autoimmune problems are so very fickle.

serenityfrye

In my case both gluten and dairy trigger flare ups. Every single time. If I eat something cooked in butter I'll be in bed with horrible joint pain (even in my spine these days) for a couple days. My mom is the same way and her symptoms stay mostly under control unless she eats off her diet. But everyone's illness is different and what works for us weight necessarily work for others

shenanigans52139

I have RA and lupus. I quit the steroids a few months ago after gaining 50lbs in a year. I'm struggling to lose it. Seems like I do well for a few weeks and drop weight, have a flare and put it all back on.

CocoMSU

I sympothize completely!

I also have an undiagnosed autoimmune disease that causes pressure triggered full body hives (I take daily antihistamines to keep them at bay, but also have monthly hormone-triggered flare ups). Hashimotos runs in my family too.

If I can avoid products containing flavor enhancers (MSG, Yeast Extract, Riboneucletodes, 627-631, etc.), kiwis, eggplants, dehydrated dairy, and latex, I can handle the day pretty well (exercise, get my household chores done, etc). But if I eat something that contains a trigger, I feel all over yucky for days. It's really hard to get over that funk, but I've found that a day or two of lots of sleep and zero processed food helps.

lporter229

I have Crohn's disease. I have tried to control my disease with diet (gluten free is a big help, but does not alone keep me in remission). After many years of experimenting with different treatment plans and trying to eliminate meds, I have finally resigned myself to the fact that I will be on immunosuppresants for the rest of my life. I get infusions of Remicade every 6 weeks. When I get towards the end of my infusion cycle, I begin to notice an increase in joint pain and fatigue and I know it's time for my medication. Remicade has really been a terrific drug for me, despite the somewhat scary risks and side effects (I do have a mild allergic reaction of mouth swelling for two days after my infusion. I take Benadryl for it).

As far as staying on track, strangely enough, I think the best thing that keeps me feeling good is exercise. I have learned through the years that I can not let myself get down about having to deal with this disease. It just puts me into a rut and makes me feel even worse. My attitude goes a long way in determining how I feel. I have decided that I am going to do everything in my power to show Crohn's disease who is boss. I use it as motivation!

gaelicstorm26

I was diagnosed with Hashi's at age 11, so like another previous poster, I'm not really sure what "normal" feels like. I force myself to be active because it does help. I find that the biggest challenge is getting motivated to put the sports bra on. After that it's easier.

Exercising really helps my mind. It's great for stress but it also helps my overall energy level. I've been having crazy blood work numbers and problems controlling my TSH over the past two years.

I also have Vitiligo and am being monitored for Lupus as well.

Honestly, being active is the key for me. Even when my joints hurt it is important to do something (a short walk is great).

serenityfrye

Yes staying limber does help the joint pain. I struggle hardest I think with brain fog. I have three kids with busy schedules and a husband who travels a lot so even a few days where I can't keep track of anything, Feel unsafe driving and managing even the little things stresses me to the max. Ifeel like a total failure those days esp when the house gets messy, I have to sleep more or I forget something for the kids for school. But I'mbeginning to be able to chart when the bad days will be so I can plan ahead (work extra hard on a good week) and that helps a little. I'm very grateful for the mercy of predictability.

crazyfordogs18

I have an autoimmune diease psoriasis only on my scalp and pretty sure psoratic arthritis.

I have changed my diet to no sugar and no gluten only on special occasions. I feel better and notice if I eat gluten or a sweets my joints hurt the next day.

Exercise helps but sometimes my Joints are very stiff and painful I still workout but don't push myself as much when I'm in pain.

I have psoriatic arthritis in my knee and toe and ankle and maybe in my lower back. Basically it causes inflammation in the joints and they swell up like my toe looks like a sausage and my knee last winter was so swollen like a softball I couldn't make it up the stairs. I cried every night ,simple walking was extremely painful. Worst of all I ate candy every night and ate terrible not helping my condition and gaining more weight.

I knew I had to change so this fall I decided I need to lose weight.
I have lost a little weight and found some dance fitness classes I love so I push through the pain. It's nice to see other people here with support with auto immune diease

Losing weight is so important for my arthritis but I hope this winter I get the pain and swelling under control so I can stick to my workouts and of course eating well.

crazyfordogs18

I am pretty sure I have psoriatic arthritis maybe you have heard of it? Waiting on my doctors appointment in December for tests they are super booked.

I'm so sorry you have Ankylosing spondylitis I have heard of that and done research on it.

Can I ask what your symptoms were?
I'm having terrible lower back pain right above my butt for months and it hurts when sitting and laying down and is stiff in the morning.

I thought daily Exercise walking yoga and dance fitness would help but it only helps a little. And I have had loud cracking in my lower back which I have never had before.

I have never had back pain that won't go away.

I'm scared it could be AS I read if you have psoriatic arthritis you can have this.

GaleHawkins wrote: »

@serenityfrye the autoimmune problems are tough on many levels. I have Ankylosing Spondylitis (AS) and another family member has Lupus. My AS has deformed my body so people are like OK he must to been in a bad car wreck (I hear that over and over). Whereas with Lupus you may feel like you have been in a car wreck but look fine so people still make unkind remarks about you not being as active as others, etc.

I feel much better after giving up sugars and grains a year ago at the age of 63. While that managed the pain OK and cured the IBS, etc things still are not perfect but much better.

Not so much now but a weather change due to a low pressure system still drags me down. I try to just rest more but life often does not corporate. I think women with kids have it the worse because of the demands on them. A demanding workplace can be an issue for all of us still working.

I do a lot of goggling and keep trying to learn more. I research a lot of things that get posted on MFP that are new to me. I am learning diet does make a difference in how I feel in my case.

monte74

I have Crohn's disease (IBD) and IBS.. I just made a rule that if there's an ingredient one something I don't understand, I don't eat it. Other than that I pretty strictly follow low Fodmap type diet, helped the IBS a lot and keep the IBD in remission, but when I'm stressed, can't do much about it...

zane856

I have Crohn's as well, I had a bowel resection and am on Humira so I am technically in remission, but still have a lot of stomach issues resulting from it. My biggest advice on bad days/weeks is to move around. Go on long walks, just whatever you can do to keep from staying stagnant. I know its easier said than done when all you want to do is stay on the couch, but I have found that if I can just motivate myself to start moving and not stop until I feel some relief, it helps tremendously!

swiviol

lporter229 wrote: »

I have Crohn's disease. I have tried to control my disease with diet (gluten free is a big help, but does not alone keep me in remission). After many years of experimenting with different treatment plans and trying to eliminate meds, I have finally resigned myself to the fact that I will be on immunosuppresants for the rest of my life. I get infusions of Remicade every 6 weeks. When I get towards the end of my infusion cycle, I begin to notice an increase in joint pain and fatigue and I know it's time for my medication. Remicade has really been a terrific drug for me, despite the somewhat scary risks and side effects (I do have a mild allergic reaction of mouth swelling for two days after my infusion. I take Benadryl for it).

As far as staying on track, strangely enough, I think the best thing that keeps me feeling good is exercise. I have learned through the years that I can not let myself get down about having to deal with this disease. It just puts me into a rut and makes me feel even worse. My attitude goes a long way in determining how I feel. I have decided that I am going to do everything in my power to show Crohn's disease who is boss. I use it as motivation!

Lporter229- so you like Remicade, then? My doc wants me to try that or humira but I'm scared of the side effects.

singingflutelady

I have Crohn's too. I am on Remicade and imuran

Shannmfp11

I have MS and fortunately I am symptom free and I have been since February 2008. I was diagnosed a few weeks before the symptoms stopped. I am trying to cut out gluten....taking baby steps.

ohmyllama

Hello! I have lupus, but I'm very happy to say that I haven't had a flare up in a long time, knock on wood. In my case, there's severe muscle pain, hair loss, mouth sores, migraines, skin rashes, cold appendages, and major fatigue. If anyone would like to add me, feel free!! I can totally sympathize with those who encounter flare ups and such.

Juniper3411

My doctor suspects that I could have an autoimmune disease but we are still investigating it. I am doing primal to see if cutting all of the inflammatory stuff will help. I've been doing it for a month and I feel much better! I've had IBS since i was 18 though, I'm thinking I have something stomach related.

katiemckinley13

Hello! I have an autoimmune disease called ITP! It's a clotting disorder where your antibodies attack your platelets causing you to bruise very easily, hemorrhage easily if hurt, and cause you to be sick quite frequently. I've had it for two years now and I'm a frequent visitor of my local hospital. Doctors have talked about a splenectomy instead of steroids because I'm an ED survivor and they know the steroids will put on weight (something I'm terrified of). Nothing set in stone yet especially since my platelet levels went up to 80,000 instead of my regular range of 20,000 to 40,000. Yay!! Doctors are keeping a close eye since I tend to fluctuate like crazy. Here's to hoping it only goes up! Since I'm sick often it makes working out so much harder. I'm one to work out at least three to five times a week but then I get sick with something and it lasts forever ruining my regimen. It's like starting all over is a constant. It's so frustrating

kportwood85

I have multiple sclerosis, I mostly try and eat whole foods and that really seems to have helped. But when things flare up, I can pretty much be useless for days.