Scoliosis, Osteoporosis, Chronic Pain, Etc.

[Nantzie]

Anyone else dealing with chronic pain because of something like this? I've heard it called an "invisible disability". Which is really accurate. You wouldn't know I had scoliosis to look at me because it's in my lower back. Heck, I didn't even know until a few years ago. I always had a problem with my back going out, but they've got whole stores devoted to selling things to help people with lower back pain. So I just thought that was what was going on. Then one time my back was out and stayed out. My husband talked me into going to the doctor, and boom. Scoliosis.

I've got a good friend too who has bilateral shoulder injuries and has a real hard time doing anything strengthwise with her arms. She also has fibromyalgia. Anyone else dealing with chronic pain of one sort or another?

I'm getting really frustrated because I'm always either in pain, or trying to avoid doing something that will ultimately cause me days of pain. I'm so tired of having people look at me like they think I'm making it up. You can't fake x-rays, but whatever... I'm so sore today that I can't even stand up straight, and I had people rolling their eyes at each other because I'm always in some kind of pain or having some kind of stomach problem. Well, gee. I'm sorry that my pain is an inconvenience to you.

The thing that really makes me angry is I'm a pull yourself up by your bootstraps kind of girl. I've always been a very independent person, and don't like asking for help, even when it need it. But it's actually gotten to the point where I'm thinking about asking my doctor how I get a disabled parking placard for my really bad days. So it's really bad.

My MIL is always asking me to go do things I can't do without hurting myself. She's very active and athletic, which I think is awesome, but I can't go play soccer, or go hiking, or anything like that. I appreciate being asked anyway because it's nice to be included. But when I say no thanks, she pushes me until I have to remind her (again) that it's just not something I can do with my back problems (not to mention my gastro symptoms, which I DO NOT want to discuss all the time with my mother in law, thank you very much...). Which makes her roll her eyes like I'm sitting there whining about it. Then she says isn't there something you can DO about that? Well, as soon as they figure out how to regenerate bone, I'll let you know.

But then, if she catches a cold, she gets all bent out of shape that people aren't falling all over themselves to help her.

I'm just so tired of being in pain. I'm tired of people asking about it. I'm tired of having to explain it to the same people over and over and over (and over) again. I'm tired of the eye rolling. I'm tired of people acting as if me being in pain is an inconvenience to them. I'm tired of doing everything myself for weeks and months on end to the point that I can barely move, then ask for help with something that might take a couple hours out of someone's day and get treated like I'm some kind of drama queen who's just trying to get attention.

And now, on top of all of that, I might have celiac disease. Lovely. I can just imagine how THIS is gonna go. I'm actually not worried about how I'm going to deal with eating gluten-free. I'm more dreading dealing with everyone else.

Blech...

Nancy

[nogluten-]

Nantzie,

I'm sorry you're experiencing a lack of support right now. That can be very frustrating, and it hurts ! I also understand how some people will think because you look o.k. that you must be feeling fine. I don't think my mom really accepted things until she saw me getting an infusion of Remicade. That was a lightbulb moment for her. A lot of people with Crohn's have a condition called ankling spondylitis, which can be treated in a number of ways. Many also have pain after ingesting gluten, so that could be exacerbating things as well. Maybe you should ask your doctor for a camera endoscopy to insure that you don't have Ulcerative Colitis or Crohn's. If that isn't a problem, a rheumatologist should be able to help. Scoliosis can't be a picnic, and you shouldnt have to live life in pain all of the time. I hope you get some relief soon. Take care.

P.S., if you haven't already, you might want to get a bone density test.

[Nantzie]

Thanks. I will definitely ask about that when I see my doctor. For some reason I never thought about consulting a rheumatologist either. So that should help too.

I feel so awful because sometimes I wish that some of the people in my life could experience what it feels like for a few days. But then I feel SO guilty for wishing that on people that I care about. But still...

Nancy

[Jnkmnky]

Some people have a very myopic view of life...completely limited to their own experiences. Consider THAT a disability more so than the disabilities you suffer from. I'd rather be physically limited than emotionally limited.

[Nantzie]

Oooo.... That's a good one. Thank you for a new way to look at the situation.

Nancy

[XrayBrian]

I know how you feel... I've been gluten-free since age 12 and dealt with chronic pain, since at least age 18. Chronic fatigue is always near by, as well as depression...Exercise and streaching helps. Nerotin and cymbalta help the pain and dealing with the emotional impact of the pain...

Going gluten-free will make a huge difference. Allow you to heal and get all the nutrients from your food...

So far as how people perceive us, there are always people who will never get it. Ive really started feeling my age though i look a good 15yrs younger than i really am. So i get alot of s$#& from younger people who think i should be faster stronger etc when im having a bad pain day... just gotta do your best, dont over do it but push yourself to get a healthy amount of exercise, especially on rough days getting up and moving is the best thing to do...

thank you for sharing...makes me realize im not alone in this...

[pikakegirl]

Really relate to your struggle. When diagnosed i thought wow something i can control to stop all the fatigue and pain from CFS and fibromyalgia diagnosis. I am better in so many ways from all the symptoms of malnutrition, fatigue and sinus allergy manifestations but my neuromuscular pain is diffrrent and more debilitating. I thoerise that going gluten free shook my body up immunologically. Evidence in my hashimotos got better for a few years now back to same level of meds and my soreness all over is gone. Also my hormones crashed into menopause. I was over 40 so some changes were not a huge surprise. I am so much healthier overall going gluten free and no processed food. My arterial sclerosis was reversed and i lost 90 lbs of inflamation. Truly Celiac is not my biggest struggle. Like you it is the day to day struggle with my physical limitations which are visually invisible. I do not socialise but keep my loved ones who believe in me close. They knew me when i was a sporty adventurer who sought out challenges and know i am in terrible pain to be bedridden the day after i try to do anything physical from walking a block to washing my hair. My will to live is strong and my tenatious (stubborn attitude) keeps me seeking answers that will give me quality of life long after physicans have thrown in the towel.