Just curious... health issues?

[Robyn]

I was just wondering how many of you out there are suffering chronic health issues? Do you often find that people don't 'get it'? I know I do and it occurred to me that some of you might appreciate support as much as I do.

You see I have been dealing with a chronic health issue for several years now and while I don't have a firm diagnosis it significantly impacts my life and my ability to earn money and do fun things. While my rheumatologist hasn't given me a firm diagnosis I do know I have connective tissue disease and probably also fibromyalgia. I also have symptoms of sjogrens but also no diagnosis. Two of the more well known connective tissue diseases are Lupus and Rheumatoid Arthritis, and Sjogrens is also one. I have a lot of symptoms of all three and possibly some other.

My illness effects me in numerous ways and I have a huge long list of symptoms. Including muscular and joint pain, memory issues, 'brain fog', extreme fatigue and low endurance. I spend most days confined to the couch. I manage to design in short spurts but so wish I could do more!

I try really hard to remain positive but know it helps to talk about it to other people who understand. There are some days it gets me down, but for the most part I like to think I remain relatively positive.

Anyway, I thought it might be nice to have a support thread for those of you with chronic health issues. I know there are a lot more than I ever imagined!
I just want you to know I am here to offer support :yippee::tup:, offer hugs :hug: and maybe we can help each other be positive? :think:
Please share your health issues and how you try and keep busy and positive. I know I would love to hear and offer my support. :popcorn: :love3:

[~*Kiana*~]

I'm here for support and thankful that I do not suffer from anything. Just wanted to offer hugs!!!

[Robyn]

Aww you are too sweet Kiana! Hugs are always welcome!

[bendipez]

I think when dealing with major health issues a good support system is almost (if not more)as important as medication!!! And during Shawn's medical issues the support here at DSP has been invaluable!!! So hugs and support for everyone who needs them!!

[hlmbugle]

My chronic issues are nothing compared to that. I have chronic sinusitis, and sometimes I go for months not being able to breathe through my nose. In the grand scheme of things, mine is not so bad, but you are right--just having people who understand makes a huge difference. The first time I had this problem a few years back, people at school just couldn't understand why a music teacher who couldn't breathe through her nose would have issues. Some of them even probably thought I was making it up. They had NO idea. Now there are good days and bad days, good weeks and bad weeks. But overall, I am in ok shape, so I'm not complaining. I'd much rather deal with this than something completely debilitating.

[PQ]

My chronic issues are nothing compared to that. I have chronic sinusitis, and sometimes I go for months not being able to breathe through my nose. In the grand scheme of things, mine is not so bad, but you are right--just having people who understand makes a huge difference. The first time I had this problem a few years back, people at school just couldn't understand why a music teacher who couldn't breathe through her nose would have issues. Some of them even probably thought I was making it up. They had NO idea. Now there are good days and bad days, good weeks and bad weeks. But overall, I am in ok shape, so I'm not complaining. I'd much rather deal with this than something completely debilitating.

Have you ever been prescribed steroid nasal spray? That usually does the trick.....

[hlmbugle]

Have you ever been prescribed steroid nasal spray? That usually does the trick.....

Nasonex, Astepro, NasocortAQ

Claritin, Singulair, some weird experimental thing that burned the inside of my nose, and surgery. I've been prescribed ALL KINDS of crap, and taken OTC things too. A lot of it stems from the fact that I am allergic to everything. I didn't know any of this until 2 years ago though. Weird.

[ReneT]

I was diagnosed with fibromyalgia in October after almost 2 tears of constant muscular pain, lots of tests to rule out other stuff, nerve conduction studies, steroid shots, a shoulder surgery, physical therapy, blah blah blah.

Once I was put on the Lyrica for it, I felt much better as far as the muscular pain goes, but I have the brain "fibro fog", insomnia and anxiety that goes along with it that the medication does not help.

And yes, I find that people don't understand, or maybe they just don't care, not sure which. The only one who truly gets it is my hubby. He's really supportive, thank goodness.

[hlmbugle]

I have a teacher friend who has fibromyalgia and another girl who used to work for me at walmart had lupus, which was terrible. I can't imagine being in constant pain and/or just dog tired all the time. It is hard because when others can't see your cast or crutches, they forget there may be something internally going wrong. And people are not very understanding until they go through it. I wish all of you ladies well, and hope there is some relief for your conditions.

[Memouse]

I undersatand having chronic health issues.
I have had migraines since I was 12 years old, and then diagnosed with high blood pressure in my teens. There always seems to be something that is ongoing with me. I have chronic back issues since a fall from a horse when I was 13. Along with the migraines and HBP, I have numbness and tingling in my hands and feet at times and sleep apnea. It is always good to hear when there is something that has helps someone else with what they are suffering from.
So I hope that we might be a support system for each other.

[PK]

:wave: me too!

Fibro & carpel tunnel are my main ones, but I have plenty of others that could be seen as seperate issues but that may well be connected and part of a larger (as yet unknown) medical condition.

:hug::hug::hug:

[Rosie G]

Funny that I should come across this thread this morning because I am up way too early because of arthritis pain in my hip.

I have had fibro since I was in my 20s and that was before it finally had a name. My orthopaedic doctor just called it connective tissue disorder back then. Over the years, I have had remission of the symptoms from time to time, but the sleep disorder never seems to go away.

I found a wonderful pain doctor, but have decided that I can't live on facet joint injections and epidurals every 2 - 3 months. I just take 800 mg ibuprofen and xanax at night. I have been taking coconut oil and highly recommend it for the "fibro fog".

My general physician just gave me a prescription for a handicap placard for my car because my arthritis. I hesitate to use it because of not having outward signs of a handicap but I am sure on bad days I won't care what anyone thinks.

[Robyn]

My chronic issues are nothing compared to that. I have chronic sinusitis, and sometimes I go for months not being able to breathe through my nose. In the grand scheme of things, mine is not so bad, but you are right--just having people who understand makes a huge difference. The first time I had this problem a few years back, people at school just couldn't understand why a music teacher who couldn't breathe through her nose would have issues. Some of them even probably thought I was making it up. They had NO idea. Now there are good days and bad days, good weeks and bad weeks. But overall, I am in ok shape, so I'm not complaining. I'd much rather deal with this than something completely debilitating.

I don't know after all the headaches, blocked noses and copious amounts of green coming out of my nose this past week thanks to a cold I think it would be pretty difficult to live with! I wonder if acupuncture would work for this?

I was diagnosed with fibromyalgia in October after almost 2 tears of constant muscular pain, lots of tests to rule out other stuff, nerve conduction studies, steroid shots, a shoulder surgery, physical therapy, blah blah blah.

Once I was put on the Lyrica for it, I felt much better as far as the muscular pain goes, but I have the brain "fibro fog", insomnia and anxiety that goes along with it that the medication does not help.

And yes, I find that people don't understand, or maybe they just don't care, not sure which. The only one who truly gets it is my hubby. He's really supportive, thank goodness.


It amazes me how many people are diagnosed with fibromyalgia. I must look up Lyrica as I have no idea what that is. My Rheumy is mostly treating my connective tissue disease although I am on one medication for insomnia which is known to be used for fibro. I am sooo grateful that hubby is so supportive and he gets it. It did take him a while mind you and at one point he was convinced if I could loose weight I would get better. Thankfully my rheumy advised otherwise. Loosing weight is not easy when you can't exercise!


Now however he totally gets it and will now take one look at my face and know if I am having a bad day. I have to be so careful about overdoing things and that is one thing he doesn't always get yet, mostly when we are at outings and he doesn't want to go and I really need to. I know exactly when I am starting to overdo it. For the most part he is really good about it tho. Thank goodness! I don't know how I would cope if he wasn't.

[Robyn]

I think when dealing with major health issues a good support system is almost (if not more)as important as medication!!! And during Shawn's medical issues the support here at DSP has been invaluable!!! So hugs and support for everyone who needs them!!

Absolutely, without support I think the stress is more, which is never good no matter what your chronic issue is!

[Robyn]

Funny that I should come across this thread this morning because I am up way too early because of arthritis pain in my hip.

I have had fibro since I was in my 20s and that was before it finally had a name. My orthopaedic doctor just called it connective tissue disorder back then. Over the years, I have had remission of the symptoms from time to time, but the sleep disorder never seems to go away.

I found a wonderful pain doctor, but have decided that I can't live on facet joint injections and epidurals every 2 - 3 months. I just take 800 mg ibuprofen and xanax at night. I have been taking coconut oil and highly recommend it for the "fibro fog".

My general physician just gave me a prescription for a handicap placard for my car because my arthritis. I hesitate to use it because of not having outward signs of a handicap but I am sure on bad days I won't care what anyone thinks.

I am on mobic which is a NSAID for my joint pain and it mostly keeps it under control. I take half a tablet twice a day. It is only with weather changes and wet weather that it generally bothers me, but my muscular pain is more frequent.


I have tossed up so many times whether to get my gp to sign a form to get a disabled card for the car, but generally when I am flaring I don't go to the shops and when I am not flaring despite how tiring it is for me, I could use the exercise so to date I haven't applied. Plus I do wonder how people would react when they see me walking seemingly perfectly normally from a disabled parking spot.


I have just recently weaned of Zoloft which was for anxiety in the hopes it would reduce my sweating but so far it doesn't seem to have made any difference and the return of anxiety is not pleasant, but at least for now it is manageable. If the sweating shows no sign of improving I may well go back on the zoloft because I HATE the anxiety and I sleep much better on it.


Did you have any abnormalities in your blood work when the doctor called it connective tissue disorder? My blood abnormalities are the main thing stopping my rheumy from saying it is fibro, because fibro doesn't effect your blood levels.

I have a teacher friend who has fibromyalgia and another girl who used to work for me at walmart had lupus, which was terrible. I can't imagine being in constant pain and/or just dog tired all the time. It is hard because when others can't see your cast or crutches, they forget there may be something internally going wrong. And people are not very understanding until they go through it. I wish all of you ladies well, and hope there is some relief for your conditions.


You are so right, I am convinced one particular family member who shall remain unnamed thinks I am making it up or am a hypochondriac because he doesn't see the effects of my illness. It so bugs me!

I undersatand having chronic health issues.
I have had migraines since I was 12 years old, and then diagnosed with high blood pressure in my teens. There always seems to be something that is ongoing with me. I have chronic back issues since a fall from a horse when I was 13. Along with the migraines and HBP, I have numbness and tingling in my hands and feet at times and sleep apnea. It is always good to hear when there is something that has helps someone else with what they are suffering from.
So I hope that we might be a support system for each other.


Oh no fun! My mother had migraines throughout her reproductive years. She had a full hysterectomy in her late 40s because of it because she had worked out her periods would bring them on but it wasn't till she stopped the hormone therapy a few years ago that the migraines finally stopped. She used to get terribly sick with them.

:wave: me too!

Fibro & carpel tunnel are my main ones, but I have plenty of others that could be seen as seperate issues but that may well be connected and part of a larger (as yet unknown) medical condition.

:hug::hug::hug:


Carpel tunnel is related to fibro isn't it PK? I am sure I have read that somewhere. Carpel tunnel is one of the very short list of symptoms I don't have. LOL

[bendipez]

I undersatand having chronic health issues.
I have had migraines since I was 12 years old, and then diagnosed with high blood pressure in my teens. There always seems to be something that is ongoing with me. I have chronic back issues since a fall from a horse when I was 13. Along with the migraines and HBP, I have numbness and tingling in my hands and feet at times and sleep apnea. It is always good to hear when there is something that has helps someone else with what they are suffering from.
So I hope that we might be a support system for each other.

Have one word for migraines....Botox!!!! I had 20 units of Botox in mid Febuary for migraines and since then have only had 1 a month and excedrine migraine now takes care of it right away!!!

[bendipez]

And for sinus issues a Neti pot works wonders!! Also check that there are no dental issues!!!

[mcbowersox]

I have chronic medical issues, too. I've been dealing with it since I was 19 (I'm 36 now, so 17 years). It started with severe fatigue. My pediatrician (i was home from college for the summer and she was the only doc I had) did a little 12 question quiz and diagnosed me with depression and put me on Zoloft. This was the worst thing that could have happened to me, because from that point on every doctor I went to told me that it was all in my head.

So I spent years thinking that I should somehow be able to think myself out of all of my symptoms. Learning to hate myself for not being able to. I believe the medications caused more problems than anything because I didn't really need them. I started having debilitating panic attacks and gained 70 pounds in a year.

After over 20 doctors and therapists, tons of wrong diagnoses and medications I started looking into more holistic care. Even in that realm it has taken several doctors. Though each one has gotten a bit closer to the issues.

I still don't know that we are totally at the bottom of it. Every time I think we've got it figured out, something changes. But right now my main diagnoses are Hashimoto's Thyroiditis (autoimmune thyroid disease), severe Adrenal Fatigue (my adrenals basically stopped functioning). My vitamin D and ferritin levels (iron) are bottomed out, but we're getting those up with supplements.

I have found the most wonderful, caring doctor and he is committed to getting to the bottom of it all. There are hormonal issues that have yet to be addressed, but we are dealing with a couple of things at a time. I am functioning better now than I was last summer. Last summer I barely moved for months. I laid on the couch and was in so much pain I tried not to move.

Cutting gluten from my diet made a HUGE difference in my level of pain. I would highly recommend trying it if you're suffering from chronic pain issues. Within a week of removing it from my diet completely I was like a different person. I have been told different things about this from different doctors. One doc said the gluten triggered the autoimmune response from my Hashimoto's. My current doc says it can make inflammation worse. Cutting gluten is hard at first, but it gets a lot easier. I've been off it for a year and most of the time I don't miss it. Cutting dairy is much, much harder! For 6 months of this past year I was off of both!!

I have good days and bad days but most of the time I am REALLY low energy. I have a hard time keeping up with all the things I should be doing. My husband is super understanding and he does so much for me. But it has taken a huge toll on our marriage. And it has taken an even bigger financial toll. Most of the doctors who have been able to help me, including my current doctor, don't accept insurance. So we are paying for it all out of pocket. That along with medications and supplements gets astronomical. We are living on one income and it's really hard. I feel so guilty because we can't afford so much because of my health issues. I know it's not my fault. . . but still.

Anyhow, I think I've blabbed on for long enough. That's my story. I have done tons and tons of reading and research. I feel like I have a lot of information and things that I'm happy to share. But I don't want to offer unwanted advice either! I hope I can be a support to anyone else who is struggling. I certainly know how hard it is.

[Robyn]

I am so glad to hear that eating gluten free helped you Christy. When we were investigating my issues, my gp first thought I was coeliac and I was gluten free for 15mths. For me however, it was not helping at all and I was in fact getting worse. So I ended up doing a gluten challenge which proved I wasn't gluten free. The damage on my villi must have been from something else. I never did get a positive antibody test.

So for me, eating gluten free made no difference. I was very strict with it, I had a separate toaster, made my own bread, had a separate breadboard, separate jam and peanut paste, so I didn't get crumbs, etc etc.


I am also lactose intolerant but I always wonder how much that effects my illness. I find it really hard not to have dairy products because I don't tolerate calcium supplements very well and I really crave dairy when I don't have it and get muscle cramps etc. I don't often react to dairy unless I have too much (ie more than one serve at a time). With dairy I feel like I am damned if I do and damned if I don't. I can't imagine myself not eating it.


I am the same Christy in that I have a hard time keeping up with things I need to do. There are some days I can do nothing at all. It is very much a balancing act and a matter of hoping I can do it in a few days or before a deadline. I try and listen to my body as much as I can and rest when I need to etc.


Do you take thyroid medication Christy? Does that help much if you do?


My mother has under active thyroid and while they don't know much yet (I don't think she is on mediation yet, I must ask) I do wonder how much it will help. She has some pretty bad memory issues which I am hoping is from the under active thyroid and not a nastier cause. I have had my thyroid tested so many times and I often wonder if I might still have under active thyroid even though it is not reflected in test results. My grandmother on my Dad's side had thyroid issues as well but we don't know whether she had under or overactive.


My iron levels were pretty severe until I had an iron infusion a few months ago. I don't tolerate iron supplements either. The hematologist said I will likely need infusions until I reach menopause.

[ReneT]

In addition to my fibro, I too, have chronic migraines for about 18 years now, high blood pressure, bladder issues, GERD, a hiatal hernia which makes me feel like I'm having a heart attack when it bothers me (I think if I were to actually HAVE a real heart attack, I would probably ignore it, thinking it was probably the hiatal hernia :rolleyes:).

I only take the Lyrica when i absolutely have to now because it started causing swelling in my hands and feet that was so bad i could not wear my wedding ring all day. I called my doctor about it and he said exercise will take care of that. My chronic insomnia makes the headaches, fibro, and anxiety worse, but all my doctor will say is exercise, again, will take care of all of that AND help the fibro pain. Well, when I take care of Jace for 11 hours a day on average, have a house to run, cook 3 days a week (the rest of the time they can eat leftovers or fend for themselves - except Jace), do a part time business from our home my husband started years ago, pay bills, do laundry, buy groceries, etc etc etc, who the heck has time, energy or motivation to exercise when it's only going to hurt anyway?

Robyn, Lyrica is a medication that apparently works on the nerves that are telling the brain that the muscles are hurting, or at least that's how I understand it in relation to the fibro.

[Rosie G]

I am on mobic which is a NSAID for my joint pain and it mostly keeps it under control. I take half a tablet twice a day. It is only with weather changes and wet weather that it generally bothers me, but my muscular pain is more frequent.

I have tossed up so many times whether to get my gp to sign a form to get a disabled card for the car, but generally when I am flaring I don't go to the shops and when I am not flaring despite how tiring it is for me, I could use the exercise so to date I haven't applied. Plus I do wonder how people would react when they see me walking seemingly perfectly normally from a disabled parking spot.

I have just recently weaned of Zoloft which was for anxiety in the hopes it would reduce my sweating but so far it doesn't seem to have made any difference and the return of anxiety is not pleasant, but at least for now it is manageable. If the sweating shows no sign of improving I may well go back on the zoloft because I HATE the anxiety and I sleep much better on it.

Did you have any abnormalities in your blood work when the doctor called it connective tissue disorder? My blood abnormalities are the main thing stopping my rheumy from saying it is fibro, because fibro doesn't effect your blood levels.

You are so right, I am convinced one particular family member who shall remain unnamed thinks I am making it up or am a hypochondriac because he doesn't see the effects of my illness. It so bugs me!

Oh no fun! My mother had migraines throughout her reproductive years. She had a full hysterectomy in her late 40s because of it because she had worked out her periods would bring them on but it wasn't till she stopped the hormone therapy a few years ago that the migraines finally stopped. She used to get terribly sick with them.

Carpel tunnel is related to fibro isn't it PK? I am sure I have read that somewhere. Carpel tunnel is one of the very short list of symptoms I don't have. LOL

I have been on mobic and it hurt my stomach so much that I discontinued it. My pain doctor has tried so much stuff; once it was an off label use of a epilepsy drug which made me feel like my head had moved next door. Pain meds tend to make me sick so I leave them off.

I really highly recommend coconut oil as I said before. Also I am on a soy free diet.

My blood work has usually been normal. My ortho just knew that something was going on and gave it his best guess at the time. I have just about everyone of the trigger points used to diagnose fibro plus the sleep disorder.

[Rosie G]

In addition to my fibro, I too, have chronic migraines for about 18 years now, high blood pressure, bladder issues, GERD, a hiatal hernia which makes me feel like I'm having a heart attack when it bothers me (I think if I were to actually HAVE a real heart attack, I would probably ignore it, thinking it was probably the hiatal hernia :rolleyes:).

I only take the Lyrica when i absolutely have to now because it started causing swelling in my hands and feet that was so bad i could not wear my wedding ring all day. I called my doctor about it and he said exercise will take care of that. My chronic insomnia makes the headaches, fibro, and anxiety worse, but all my doctor will say is exercise, again, will take care of all of that AND help the fibro pain. Well, when I take care of Jace for 11 hours a day on average, have a house to run, cook 3 days a week (the rest of the time they can eat leftovers or fend for themselves - except Jace), do a part time business from our home my husband started years ago, pay bills, do laundry, buy groceries, etc etc etc, who the heck has time, energy or motivation to exercise when it's only going to hurt anyway?

Robyn, Lyrica is a medication that apparently works on the nerves that are telling the brain that the muscles are hurting, or at least that's how I understand it in relation to the fibro.

Rene, have you ever taken xanax? My pain doctor says it is a good muscle relaxer and helps with sleep. It has really helped me.

[ReneT]

Rene, have you ever taken xanax? My pain doctor says it is a good muscle relaxer and helps with sleep. It has really helped me.

I have in the past, but my doctor is pretty anti-anxiety/sleep meds. Which is pretty much what I have found with most doctors in this area.

[Robyn]

I have most of the trigger points for fibro but not all, and sometimes they hurt more than others. I never know what of my symptoms is from fibro and what is from my connective tissue disease. Not that it really matters I guess.

Connective Tissue Disease usually shows in blood work but fibro does not as far as I am aware. Unfortunately my ANA is always negative so according to my rheumy that rules out lupus (although I have read that you can have lupus with negative ANA) and while I have symptoms of sjogrens my sjogrens specific blood work has always been negative also.

[mariafer]

Well I just had to jump in because I do have some chronic dealings though for the most part can keep up with my life. My biggest and most noticeable change is weight gain.

I have an underactive thyroid and even though I am on medicine and am no longer moody or tired (THANK GOD!) I can't seem to lose weight! I actually gain even when I am on a diet. I am planning on going to a specialist since I have high prolactin also and it would be cool if I could get my hormones all in check. (the prolaction could also be causing me not to lose weight since it makes me hold fat... it is a hormone you produce when you are pregnant that helps you produce milk and store fat that you need during pregnancy except I am not pregnant so I need neither). I am not producing milk which has my doctor baffled but I didn't like him so I am looking for another. I also have PCOS (polycystic ovarian syndrome) which I do not feel any different for having it but apparently could be the cause of my cholesterol being so high. I would have never known I had it if it had not been for the high prolactin because they usually find it when you can't have kids. I have two... so God really blessed us. Most women with PCOS had to have fertility treatments for their kids and all that goes with that. We had two relatively close and with only months of trying.

I also have severe allergy problems. Thankfully I did two years of shots and it improved sooo much. At my worst I couldn't breathe and wouldn't go outside because I got worse and ended up with a sinus infection. This was the hardest on my marriage because he loves to go to the park and be outside and take the kids and I never wanted to go. Now I go but I usually need to take some allergy medicine. It is so much better. The bad news is my childhood skin allergies seem to be back. I have excema on my belly and legs and arms. This just started so I am hoping that it is just through summer and I will be back to normal in winter. My dermatologist as a child told me that I didn't have asthma because I had all these skin problems... I wonder if when the shots made me better, my allergies just went back to where they started. Who knows. The good news is my mom gave me a list of things she used to do when I was a kid to relieve the itch and make it better so I have things to try!

Can I say the hardest part for me in all this has been the doctors. Some have no bedside manners. I am considering two new ones. A holistic one that a friend recommended and an endocrinologist at a weight loss clinic... the last one specializes in both thyroid and prolactin... so he might be my best bet.

Good luck to all of you. I really hope you all find something that works for you. Not knowing what is wrong is the worst. Before I figured out the thyroid thing I thought I was going crazy always tired and always in a bad mood. I thought I was depressed and was ready to go visit a counselor or psychiatrist because I always felt blue. My kids I think were scared of me cause I could go from happy to mad in the bat of an eye. The medicine helped me with all of this and it felt like I was coming out of a bad dream.

[mariafer]

And for sinus issues a Neti pot works wonders!! Also check that there are no dental issues!!!

Can I just add a word of caution with the neti pot... If you feel like your ears are stuffed up also, DON'T USE IT. Atleast not until you figure out how to take care of that first. I was recommended a nasal spray to use before the pot but it didn't work. I ended up with two ear infections from it. Not fun.

My daughter does however use it and it helps her soo much.

I have heard that in cases like mine where my ears also get stuffy that I should go to a chiropractic. I haven't gone yet but I have a few friends that swear by it. I also have friends that swear by essential oils. I have started trying some of those and I do think they help a little. Will have to update after I try them a little longer and figure out which ones are the ones I am supposed to use. I am using them for my skin and it really does take away the itch for a while.

[Robyn]

Well I just had to jump in because I do have some chronic dealings though for the most part can keep up with my life. My biggest and most noticeable change is weight gain.

I have an underactive thyroid and even though I am on medicine and am no longer moody or tired (THANK GOD!) I can't seem to lose weight! I actually gain even when I am on a diet. I am planning on going to a specialist since I have high prolactin also and it would be cool if I could get my hormones all in check. (the prolaction could also be causing me not to lose weight since it makes me hold fat... it is a hormone you produce when you are pregnant that helps you produce milk and store fat that you need during pregnancy except I am not pregnant so I need neither). I am not producing milk which has my doctor baffled but I didn't like him so I am looking for another. I also have PCOS (polycystic ovarian syndrome) which I do not feel any different for having it but apparently could be the cause of my cholesterol being so high. I would have never known I had it if it had not been for the high prolactin because they usually find it when you can't have kids. I have two... so God really blessed us. Most women with PCOS had to have fertility treatments for their kids and all that goes with that. We had two relatively close and with only months of trying.

I also have severe allergy problems. Thankfully I did two years of shots and it improved sooo much. At my worst I couldn't breathe and wouldn't go outside because I got worse and ended up with a sinus infection. This was the hardest on my marriage because he loves to go to the park and be outside and take the kids and I never wanted to go. Now I go but I usually need to take some allergy medicine. It is so much better. The bad news is my childhood skin allergies seem to be back. I have excema on my belly and legs and arms. This just started so I am hoping that it is just through summer and I will be back to normal in winter. My dermatologist as a child told me that I didn't have asthma because I had all these skin problems... I wonder if when the shots made me better, my allergies just went back to where they started. Who knows. The good news is my mom gave me a list of things she used to do when I was a kid to relieve the itch and make it better so I have things to try!

I often wonder if my autoimmune issues are related to the PCOS.

Can I say the hardest part for me in all this has been the doctors. Some have no bedside manners. I am considering two new ones. A holistic one that a friend recommended and an endocrinologist at a weight loss clinic... the last one specializes in both thyroid and prolactin... so he might be my best bet.

Good luck to all of you. I really hope you all find something that works for you. Not knowing what is wrong is the worst. Before I figured out the thyroid thing I thought I was going crazy always tired and always in a bad mood. I thought I was depressed and was ready to go visit a counselor or psychiatrist because I always felt blue. My kids I think were scared of me cause I could go from happy to mad in the bat of an eye. The medicine helped me with all of this and it felt like I was coming out of a bad dream.

I didn't mention I have high blood pressure also which developed in the past 12mths or so. I think it is caused by my auto-immune issues.


Maria, I have PCOS also and I did have fertility issues. Our eldest was an IVF baby and I had 3 miscarriages before her. I had two early miscarriages after her and we lost a baby boy to anencephaly at 18wks. Jacob was also an IVF baby. After we lost Jacob I fell pregnant naturally with Kyan. (My cycle is always better after a miscarriage!) Jasmine and Kyan are 3yrs apart.



I have issues with GERD also and am on daily medication for it. Without the reflux is unbearable and I have a LOT of pain from it and a constant sore throat.


I agree with you about the doctors, I am so over doctors with no bedside manners. I went to a different one the other day because I thought I might have sinus and she asked me all these questions about why don't I work, surely I could do some data entry or something. Of course being sick my memory wasn't working the best and I couldn't explain to here why I couldn't work. It is so frustrating to have to justify yourself to someone. I had to explain to her I was working full time but just couldn't do it any more but I couldn't explain why because I just blanked. GRRR. I won't be going back to her again. At least my regular gp gets that side of things and doesn't question it at all.

[Rosie G]

I have in the past, but my doctor is pretty anti-anxiety/sleep meds. Which is pretty much what I have found with most doctors in this area.

I think I was one lucky duck when I found a pain specialist. He seems to understand that if you don't sleep, symptoms are much worse.

[PQ]

My motto is:

IF YOU CANNOT SLEEP, YOU CANNOT BE WELL.

I have positive test results for two autoimmune diseases:
systemic ankylosing spondylitis (a chronic inflammatory disease that causes inflammation in the spine, other joints, eyes, skin, mouth, and various organs) and systemic dermatomysitis (a systemic disorder that most frequently affects the skin and muscles, but may also affect the joints, the esophagus, the lungs, and, less commonly, the heart.)

[PQ]

HERE ARE MY PEARLS OF WISDOM FOR PEOPLE WHO HAVE TO LIVE WITH A CHRONIC ILLNESS:

Autoimmune Diseases. To function properly, the immune system must also learn how to recognize and not destroy cells that belong to the body itself. Every cell carries protein markers on its surface that identifies it in one of two ways: what kind of cell it is (e.g. nerve cell, muscle cell, blood cell, etc.) and to whom that cell belongs. These markers are called major histocompatability complexes (MHCs). When functioning properly, cells of the immune system will not attack any other cell with markers identifying it as belonging to the body. Conversely, if the immune system cells do not recognize the cell as "self," they attach themselves to it and put out a signal that the body has been invaded, which in turn stimulates the production of substances such as antibodies that engulf and destroy the foreign particles. In case of autoimmune disorders, the immune system cannot distinguish between "self" cells and invader cells. As a result, the same destructive operation is carried out on the body's own cells that would normally be carried out on bacteria, viruses, and other such harmful entities.
The common denominators of autoimmune diseases. One of the things that I have figured out over the years is that regardless of which auto immune disease you have, they all have some things in common:
*inflammation
*pain
*low levels of vitamin D in the blood
*difficulty sleeping (secondary to the pain. This also includes nonrestorative sleep.)
*disturbances in mental processes (Secondary to the pain. Pain is very distracting).

Be an accurate historian. Your doctor cannot help you if you cannot be an accurate historian and knowledge is power. Get yourself a notebook and keep a diary. Write down your lab tests, doctor’s appointments, and other tests as you have them. Get a calendar and everyday write down how you are feeling and how you slept. This does not have to be a difficult process. At the top of your calendar write SLEEP/PAIN. Then, on a daily basis, simply assign a numerical value to how you slept and how much pain you have. (On a scale of 1-10, with 10 being severe pain and no sleep). All you have to do is write down two numbers per day. If my pain is somewhat severe and I slept very little, I would write down 9/8. If your pain is severe when you first get up, but things get better after you have been up for awhile, you need to watch the clock and let you doctor know how long you have to be up before things “limber up.”

The diagnosis of an autoimmune disease is based on an individual's symptoms, findings from a physical examination, and results from laboratory tests. Autoimmune diseases can be difficult to diagnose, particularly early in the course of the disease.
The lab tests that are routinely done to diagnose auto immune diseases are:
ANA (antinuclear antibody) An ANA test detects proteins called antinuclear antibodies in your blood. Your immune system normally makes antibodies to help you fight infection. The antibodies detected in an ANA test are different. They may attack your body's own tissues. A positive ANA test indicates that your immune system has launched a misdirected attack on your own healthy tissue — in other words, an autoimmune reaction.
CRC (C Reactive Protein) C-reactive protein is produced by the liver. The level of CRP rises when there is inflammation throughout the body.
ESR ESR stands for erythrocyte sedimentation rate. It is a test that indirectly measures how much inflammation is in the body.
RF (rheumatoid factor) A rheumatoid factor test measures the amount of rheumatoid factor in your blood. Rheumatoid factors are proteins produced by your immune system that can attack healthy tissue in your body. The results of this test can fluctuate.

If you cannot sleep, you cannot be well.
Buy a memory foam topper for your bed.
Limit caffeine and alcohol.
Take something to enhance sleep. I take Benadryl 25mg and amitrityline 25 mg every night.
Try to go to bed at the same time every night and get up at the same time every morning.

Do everything you can to decrease inflammation.
Take flaxseed (or fish oil….I would rather be dead than take the fish oil. I tasted dead, rotting fish all day long when I took it) everyday.
Take a multivitamin everyday.
Take over-the-counter vitamin D every day.
Exercise everyday. If your body cannot take the pounding that comes with walking, try water aerobics, bicycling, or an elliptical machine.
Do not eat foods that contain transfats. Learn to read the ingredients list on food items and if any of the following are listed, don’t eat it: margarine, partially hydrogenated vegetable oil, shortening, partially hydrogenated shortening.
Do not eat high fructose corn syrup.
If God did not make it, don’t eat it.

The number one thing that I do to control the pain is physical therapy. Once the inflammation starts, I immediately call the therapist and start deep heat /ultrasound treatments and massage. (You do not have to have a doctor’s order to have physical therapy. Call your insurance company and ask them about coverage). The results are generally profound and rapid.

Like anything else in this world, the quality of the physical therapists out there varies widely. If you try a therapist and you don’t like them, don’t stick around. Go someplace else. When you go to physical therapy, you should feel like the people there ARE THERE TO SERVE YOU. If that is not the impression that you get, LEAVE and try someone else.

I almost never take narcotics. Occasionally I will take a Tylenol #3 at bedtime if the pain is awful, but I have found that for me the narcotics really do not do a lot to decrease the pain and they make me feel awful. I do take Celebrex every day. You could also try Motrin, Tylenol, or Aleve. Just keep in mind: the number one cause for kidney failure in the USA is Tylenol. Read all medications before you take them to see if they contain Tylenol. If you take a med that contains Tylenol, so not take plain Tylenol along with it.

[Corgi Lover]

This is a great thread. I do not have anything to complain about and I am so thankful and thank God everyday! I only had a type of fibro when I was pregnant. In fact, I knew when I was 5wks along with my second child as it started immediately. It was only in my hips but I couldn't sleep as I was in a lot of pain and would only get about an hour or so before I would wake up shaking in pain. I can't imagine those of you who deal with this daily, you are amazingly strong!

I have seasonal allergies but I also have allergies to different medications. They have all come about in my 'adult' years which is a bit scary. I have found that people just do not understand the fear it causes you just to take a simple medication wondering if this is another one you will be allergic too. Thankfully so far, it has been sandpaper rash reactions nothing with my throat or mouth. But it is scary non the less.

I also have a hiatal hernia but I am thankful to have a fabulous chiropractor who treats it regularly and keeps it in check.

RENE - have you tried the chiro for yours? I know I was absoluletly miserable, it felt like everything sat under my sternum and would not go down to my stomach. It almost felt like I was going to be sick to my stomach and at times I wish I would but knew it wouldn't make a difference. After two years of this I started weight watchers and have lots almost 100 lbs. I haven't felt better....so much less issues with it.

[ReneT]

I have issues with GERD also and am on daily medication for it. Without the reflux is unbearable and I have a LOT of pain from it and a constant sore throat.

GERD is awful! I take daily med for it too, which keeps it under control. I went through a period where I was having severe pain with the hiatal hernia about once a week due to the GERD. One night the pain was so bad it was traveling down my arm and into my jaw which they say is a classic sign for a heart attack, but I didn't go to the ER because I was tired of going there and them treating me like I just had heart burn. That has settled down to being almost non-existent at this point, thank goodness. It seems to come in cycles.

I think I was one lucky duck when I found a pain specialist. He seems to understand that if you don't sleep, symptoms are much worse.

I had a GREAT pain specialist when I had pancreatic problems due to a birth defect I didn't find out about until I was 40. He was so great and helpful and understanding, but during the 2 year period while I was getting my fibro diagnosis, they sent me back to him and he told me I did not have fibro, that I just had "muscular pain", gave me some muscle relaxers, pain pills and some gel to put on the areas that hurt. None of those did a bit of good, and I was disappointed at how much he had changed his whole bedside manner in the 3-ish years since I had seen him. Very disappointing. But finally got my fibro diagnosis and once I talked the doctor into fighting it out with the insurance company about not wanting to pay for the Lyrica, I've been much better. Like I said, I only take it when I feel really bad, not every day.

My motto is:

IF YOU CANNOT SLEEP, YOU CANNOT BE WELL.


Amen to that! I rarely sleep before 2 or 3 in the morning and get up around 7. Several nights a week I may not go to bed at all or just get 1 or 2 hours sleep. I know ahead of time whether to even try to get in bed. If I can't shut down my head (which has been quite difficult recently with some family issues going on), I know there is no use getting in the bed because I know I won't sleep and there is no point to trying at that time. I definitely hurt so much more when I don't sleep then when I have an occasional night of 6 or 7 hours.

HERE ARE MY PEARLS OF WISDOM FOR PEOPLE WHO HAVE TO LIVE WITH A CHRONIC ILLNESS:

Autoimmune Diseases.

Do you think fibromayalgia will eventually be classified as an autoimmune disorder? It seems so close in lots of ways to them.

RENE - have you tried the chiro for yours? I know I was absoluletly miserable, it felt like everything sat under my sternum and would not go down to my stomach.

Yes, I try to see mine every 2 weeks if I can. I would like to go once a week, but since we live about 15 to get into town, I try to do as much as I can on the day or 2 a week I go there, and sometimes that gets pushed back on my list. I started going because I had burning nerve pain down one leg and hip. That was treated several times and also my migraines started decreasing. I can really tell that it has helped the fibro, but he has this little thing he calls a "jack hammer". I think it's for adjusting people who have degenerative disk disease so they can't be adjusted the normal way, but he puts it on my really painful areas, usually the back of my neck and shoulders. I kinda have a love-hate relationship with it though. I can't tell if it feels good or if it hurts, seriously. :D But I do notice it helps the muscles relax for awhile.

[PK]

Carpel tunnel is related to fibro isn't it PK? I am sure I have read that somewhere. Carpel tunnel is one of the very short list of symptoms I don't have. LOL
I asked my nice GP about this today and he said "Yes and No. No because they are two completely separate conditions and each can be present without the other. But Yes because since Fibro is an inflammatory disease, and CT is caused by inflammation, it is possible for the Fibro to trigger CT, or exacerbate it if it was present prior or developed separately."