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Newby who would love to have some support from others
17 Replies
SassieLassie - April 15

I am new to this group, and, new to Fibro, although, before being diagnosed, I strongly suspected it.

I live in New Zealand, moved here after I got married from the USA, I sure do miss it. Anyway, since arriving in October, my pains, etc have gotten worse, I saw a doctor today who diagnosed me with fibro, I have almost every symptom listed. It is a relief to \"officially\" know what it is.

My new husband, really does not understand it, he seems to think it is a type of \"Mental disorder\" and I keep telling him that is so far from the truth, but, he does not get it, this is making me even feel worse. I feel like I have no one to really talk to about all this, if I was in my home state, Washington State, near Seattle, I would have lots to talk to, but here, I feel so alone. I wonder why, when folks do not understand a disease, they always say \"mental\"?

Anyway, I look forward to talking to other \"fibro\" sufferers as well, I get lonesome and the chats would be welcome.

Take care and God bless.

 

MarymPed - May 7

Hello,
I'm new to this group, too. I first rec'd a CFS dx about three years ago from an neurologist who wrote it in my chart but didn't tell me about it, so he didn't talk to me about managing my condition, just gave me ritalin which weirdly made me take a nap. That's just one example of the paradoxical nature of the disease. Later, I started getting pain in some areas which made my PCP dx fibro, so now I'm on Savella and getting therapeutic massage every two weeks from a (saint!) woman who makes housecalls. That created lots of pain and "crookedness" for a good 24 hours after, but I'm convinced it's helping. Anyway, yeah, people think I have a bad attitude or when the muscles around my eyes are acting up or when chemicals or sunlight are bothering me that I'm probably crazy or spoiled or something. At that point I've come to realize that it's darn impossible to actually defend myself, so I've decided to just protect myself. Sometimes I'm able to explain what I'm going through, othertimes I can barely talk, so I don't. I am thankful that I don't suffer too much from the mental fibro-fog, and still possess my intelligence ( I think so!), and rich inner life that I nourish by reading, watching movies, and painting large, abstract paintings. I also take walks almost every day over at the Little League Field across the street. I still look fairly athletic at the age of 55, but I used to be lots more active--I leased and rode horses 3X/week until about 6 years ago when my thumbs started hurting and I just felt crooked up there.Hard to explain--not dizzy, just crooked. I've read posts by other fibro sufferers who say that. Anyway, I haven't been able to really get through to my husband, either. I've decided not to really try to tell him much more because he seems to get defensive. I don't have the emotional energy to feel defensive back at him (that self-
protection mode again). Anyone else have any ideas, I'll consider those too! Mary Pedersen in Smyrna, GA outside Atlanta

 

SassieLassie - May 7

A lot of your symptoms and what you are going through sound like me.

I am in a strange, new country, and all this has made my once, dormant symptoms light, a lot worse now, no one will listen, they all say I have an attitude problem, or am very nasty, well damn it, of course I am nasty, I miss America something fierce, I hurt all the time, it is scareing me, plus, my new marriage is falling apart and that is not helping either. Folks think I am spoiled too and a hypochondriact.

I will have to look into massage, my chiropractor suggsted that, hopefully, it will help.

I used to ride horses, in fact, when I lived in Arizona during high school, I use to teach it, man, I miss those days.

I guess I am in self protection mode myself, I just have no desire to fight anymore, all I want is to curl up and be left alone, the depression is awful, so is the fibro fog, I forget things all the time. I am 55 and in peri menopause, now, it will soon be full blown menopause, ugh, life sucks.

 

MarymPed - May 7

Wow, I'm 55 too AND I lived abroad as well. We lived in Poland when our daughters were 5 and 10, so it's been years, but I can't imagine how hard that would be now that this CFS/fibro thing has really blown up. Mine got worse after I had my hysterectomy and they gave me Versed which I'm 'allergic' to. I was bagged for 45 minutes and finally woke up...that's
6 years ago now, but I was having fibro episodes long before that. In Poland I always thought it was the brown coal they used that hurt my eyes so much, but the muscles around my eyes hurt almost all the time now and they feel dry, but drops don't alleviate that much. Hang in there and write to me more. Otherwise, maybe you can look into Savella?

 

SassieLassie - May 7

It is very hard living in a foreign country with all this, plus, my marriage will be ending in a divorce soon. so, there you go, all this stress is making me worse by the day.

Sounds like you have a dry eye as well. I was diagnosed with that, it goes with the fibro, they always feel dry and like dirt is in them, drops do not help much at all.

I will look into the massage, hopefully it will work.

 

MarymPed - May 7

Hey,
I'm about to sign out, but I just wanted to say that I think I know how you feel. Sorry about your marriage, but you need to go into self-protection mode and figure out how YOU are going to survive. It sounds cynical, but if you are doing all you can (you might try to get some Savella) I don't think you can make people that don't suffer from this understand what it's like. I find that magnesium, some folic acid, sometimes some liquid B-12 helps...oh, and I eat lots of watermelon!

 

MarymPed - May 7

SassieLassie--what is your name? Mine is Mary, by the way. Can you try to get some weed there in NZ? It should be easy enough to find, probably grows in the ditches. Didn't like it when I was a teen, but once in a while it seems to help now.

 

MarymPed - May 8

One more thing that seems to help me and get some endorphins flowing--driving past the horse barn by my house or watching something about horses on TV. Go to a place that has therapeutic riding, explain your situation, at least hug a few equines or maybe get back in the saddle. I would if my thumbs weren't all messed up and I had a non-judgmental place to go. BTW, I really don't think life sucks--it's just different now, and who knows? If we all make a big enough fuss, maybe they'll find better treatments.

 

SassieLassie - May 8

My name is Susie. Never tried Weed, never interested, I know it helps some, but, well, for me, I just am not intersted, I am allergic to so many things, plus, with my skipping heart, it would not be too good.

I would love tobe around horses again,there are none around here, but, if there were, I would be there.

 

MarymPed - May 30

Susie,
I just wanted to check in to see how you are feeling today. I'm doing o.k., but I have what the doctors have diagnosed as psoriasis (personally I think it's just another fibro symptom) and it's acting up a little. It's starting to get hot here in GA and that seems to make the little red bumps show up. They don't itch, just flake. I have our daughter's pug here for a visit. He's going home to Charlotte on Sunday, but it's been sorta fun having him around. I don't know too much about dogs, but this one seems to be one emotional animal. The first night he was here it sounded like he was weeping. He seems to say "I love you", too. At least he gets along with our cat, Sydney! Hang in there, Mary

 

cmonico - June 26

I'm also new to the group and was recently diagnosed, but like most people I knew for quite a long time what was going on. I also have a husband who doesn't understand at all. He's extremely healthy (very lucky guy) and doesn't understand illness at all. I don't think any of my family understands, they just get angry or roll their eyes when I say I can't go somewhere or do something because I'm not feeling well. It's extremely frustrating and I think it just adds to my symptoms.

 

SassieLassie - June 26

Hi everyone,

Well all is the same here, still hurt, did have a few messages that helped, but she is gone now for 3 months and no others here. It is winter here and so darn cold, this does not help my condition. No home has heat here, geesh, just a wood stove in the living room, the rest of house you freeze, I hate this. I hope to return back to the states in October, what a nightmare this has been.

 

MarymPed - June 27

Hi, cmonico,Susie,
This really is all such a big old mess. I am doing better right now--regular therapeutic massage, Savella (which I finally figured out I have to take in the middle of the night so I can sleep some more after I take it), hot rice packs on sore spots, this all has helped me. But it has been difficult to get people to understand why I can't do much socially. I'm relieved to have this online support group.

 

Sonja44 - June 27

The Center for Disease Control (CDC) has specific criteria for diagnostic purposes. That is all the "proof" anyone needs.

Type 1 Diabetes, MS, Lupus... they are all Auto Immune disease too. They don't know what causes them...there is no cure and they just treat symptoms. Just because a person may not "look" ill doesn't mean they aren't.

I have a wonderful Massage Therapist who can feel (what she calls) "fibro nits" in my muscles...more when I'm flaring. I was an athlete before becoming ill with FM and Chronic Fatigue Immune Dysfunction (CFIDS). Even though it can be exhausting...I choose to educate people who question the validity of these illnesses. I feel for you all because I know exactly where you're coming from.

Check out the CDC website and the CFIDS Association of America websites. Like this one...it can provide you with validation and education. Stay strong my fibro friends.

 

conniehurts - September 16

I just joined this group but have had fibro as well as other health issues for many years. A couple of you mentioned riding horses but don't for one reason or another. My wonderful hubby had me find a therapy horse (which in Alaska costs a bloody fortune to keep) and I find people to help me ride whenever I can (not terribly often sigh). I find ways to ride even when my body isn't working properly. If it bothers your thumbs hold the reins a different way even if its "wrong". Ride at a walk and be sure to have someone on hand to help if you need it. Believe me it will help!! For me just the horse is therapy but having someone to help also gives me someone to talk to. I live in rural Alaska so in the 12 yrs I have been here I haven't had the opportunity to make friends, so my side walker is my "friend". I do wish there were a way on this site to private message to share emails , phone numbers and addresses since even talking long distance is better than not talking at all! Typing is very difficult for me because my hands hurt so badly and are very stiff not to mention that I have an old desk top computer and its very hard to sit for any length of time. Gentle hugs to you all. Peace Connie

 

MarymPed - September 16

Hi, Connie,
I'm really glad you wrote this. It is good advice. My main symptom is fatigue and I think that also would make it difficult to ride--sometime my head just seems too heavy to hold it up, esp. with a helmet. Just reading about your experience with your horse made my endorphins perk up! Mary

 

conniehurts - September 16

Mary, The first time I rode my horse I rode for about 5 minutes and my hubby had to practically carry me in the cabin! Sometimes my side walker comes out and we get the horse ready to ride and I cant even mount! I too have severe exhaustion. I sleep probably 18 hours a day or more when I can. I cannot wear a helmet because of the problems in my neck which is why I have someone with the lead line to control him just in case so I can concentrate on staying in the saddle! You would be surprised at what you can do on horse back. We live about 30 miles out of town and just sitting in the truck to go to town I am too exhausted to go into the stores with my hubby, but riding is so different. I cant explain it to you but if there is a way you could go to a stable and just try riding for a few minutes on a quiet horse with help you would not believe how much better you feel even when it exhausts you! I never thought to be able to ride a horse again until 2 yrs ago. My exhaustion is so bad at times that I cant even hold a book or knitting needles sigh. I do hope that you can find a way to give it a try. I must send my hubby off work now and lay back down. I don't have what it takes to sit for long this morning but wanted to answer you. Gentle hugs.. Peace Connie

 

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