neetdesigner
Well-Known Member
Anyone here have Fibromyalgia? And willing to chat about it?
Oscraps
Fibromyalgia
- Thread starter neetdesigner
- Start date
neetdesigner
Well-Known Member
Oh wow. I was just recently diagnosed after having 8 years of issues with new ones emerging all the time. I have seen just about every specialist you can imagine.
I am glad to have a diagnosis but at the same time, I am scared, overwhelmed and almost embarrassed.
Are you better off of the medications? Or can you tell yet?
I am glad to have a diagnosis but at the same time, I am scared, overwhelmed and almost embarrassed.
Are you better off of the medications? Or can you tell yet?
hondachicc
Well-Known Member
Nee Nee...I feel for you! They have diagnosed my Mom with it...she can not take the meds... they make her feel so bad and way out of sorts. Not to mention the cost that her insurance doesn't cover! My youngest DD has been diagnosed with it as well...but I am still not too convinced that is what her problem is. I wish I had some good advice for you...
neetdesigner
Well-Known Member
I have been online all evening reading posts on a Fibro forum where everyone seems so very nice and willing to help. However, I think reading it is making me worse today as far as the overwhelmingness of it. I am overwhelmed easily anyway but now with this diagnosis, I know I need to make some life changes and slow down. that is what is overwhelming me today. How do get the daily tasks done around my home to care for my family when I should be limiting my activities. And I signed up to start dance classes in August. I donn't even know how this is going to affect my ability to take the class now.
I think I need to get some rest and maybe I will be thinking mor clearly and positively tomorrow. I already took my meds so I am more than loopy.
It is going to be an interestiing few months coming up.
Hugs to all for chatting with me throiugh this.
talk to you all tomorrow!
I think I need to get some rest and maybe I will be thinking mor clearly and positively tomorrow. I already took my meds so I am more than loopy.
It is going to be an interestiing few months coming up.
Hugs to all for chatting with me throiugh this.
talk to you all tomorrow!
Nee-- I have late stage Lyme disease- and fibromyalgia symptoms are a big part of it. Before I was diagnosed with Lyme, my drs had suspected fibro, but I never had the 11 of 18 trigger points. My pains migrate and come and go. There are also a lot of other symptoms that didn't fit with it.
But it is very similar in a lot of ways- ask Wendy when we were in Cozumel together and the handful of pills we would take LOL
Yes, a diagnosis is very difficult, and you have to read things online with caution. I know the Lyme forum I post on- most people come because they feel terrible. When you feel good, you don't have the same need to post, so you miss out on the good parts
I don't know for sure what meds Wendy was on and getting off of, but I will tell you straight off-- be very careful with any narcotic pain meds.
The O's can tell you- they heard my story as Gary and I came off of Opana. (Gary, dh, also has late stage Lyme as well as both of our kids).
But we were put on relatively small doses of Opana ER/XR?- and became so addicted to it, not even knowing it. WE came off when the Rx's were denied by insurance and we had no choice to come off pretty quickly. I went cold turkey not thinking I even had a problem. It was a month of Hell for both of us, and Gary still has some lasting w/d issues.
My advice (and FWIW- the O's will also tell you that I don't do this LOLOL!) is to listen to your body- rest when you need to. And when you feel good-- do NOT push yourself! You'll pay for it soon after.
((((hugs))))
Please feel free to chat here, or PM me any time!
But it is very similar in a lot of ways- ask Wendy when we were in Cozumel together and the handful of pills we would take LOL
Yes, a diagnosis is very difficult, and you have to read things online with caution. I know the Lyme forum I post on- most people come because they feel terrible. When you feel good, you don't have the same need to post, so you miss out on the good parts
I don't know for sure what meds Wendy was on and getting off of, but I will tell you straight off-- be very careful with any narcotic pain meds.
The O's can tell you- they heard my story as Gary and I came off of Opana. (Gary, dh, also has late stage Lyme as well as both of our kids).
But we were put on relatively small doses of Opana ER/XR?- and became so addicted to it, not even knowing it. WE came off when the Rx's were denied by insurance and we had no choice to come off pretty quickly. I went cold turkey not thinking I even had a problem. It was a month of Hell for both of us, and Gary still has some lasting w/d issues.
My advice (and FWIW- the O's will also tell you that I don't do this LOLOL!) is to listen to your body- rest when you need to. And when you feel good-- do NOT push yourself! You'll pay for it soon after.
((((hugs))))
Please feel free to chat here, or PM me any time!
clarabear
always chatty at the O!!
I don't know a lot about fibromyalgia...but I do know a little bit about doctors and what they think about it. Because you can't do a scientific test for it...and it is all based on symptoms there are a lot of doctors who will either not be very helpful or just don't believe it exists. So, if you have a doctor who isn't being very helpful find a new one. As soon as possible. And ask around, or you might be able to get some recommendations online for a doctor who is great at treating fibromyalgia.
I had an illness in high school that a lot of doctors didn't really know what to do with and we didn't switch doctors and I ended up getting more help with treatment and information from the nurse than the doctor.
One last thing...I have actually heard that there are a lot of great supplements that work really well for fibromyalgia. I knew of a lady who quit taking all the prescription stuff because the supplements helped her out so much. i don't remember what it was that she took, but it is something to look into.
I had an illness in high school that a lot of doctors didn't really know what to do with and we didn't switch doctors and I ended up getting more help with treatment and information from the nurse than the doctor.
One last thing...I have actually heard that there are a lot of great supplements that work really well for fibromyalgia. I knew of a lady who quit taking all the prescription stuff because the supplements helped her out so much. i don't remember what it was that she took, but it is something to look into.
WendyW
Well-Known Member
LOL! I had a serious handful! And yes...beware of the narcotics...they don't really help with the pain much, they just make you care less about it. But I was on such heavy pain meds (vidodin as well as time-released morphine) and they started causing other side effects. I was having terrible hot-flashes with terrible sweating...it was awful! I felt like I was losing my mind! I had a Dr. that was a little too free with the RX pad and just kept switching and writing....
I know a lot of people have found sucess with Lyrica...and I had huge hopes when I started taking it....but all I gained from that was 30lbs!!! in 6 weeks! And to top it all off, I think it made the pain worse.
And unless you're truly depressed and need antidepressants to treat depression....I would educate yourself on the side effects of antidepressants. Dr's often treat Fibromyalgia this way...saying that it somehow treats the symptoms of fibromyalgia. I don't remember ever really being depressed before gaining all the weight from the antidepressants, lol!
I don't really have any great advice...just bad experiences from taking too many drugs that didn't work. I feel better now not taking them, but I think a lot of it has to do with taking my own life back.
There is a supplement that I have found in the past to work for me called "Fibroplex". Although, I haven't started re-taking much yet since I went cold turkey off the drugs. I really was aiming to figure out what was causing the strange hot flashes, so I've been really cautious taking anything.
It is way overwhelming...and there is nothing like being in constant pain and desperate for answers and feeling so overwhelmed. I have a wonderfully supportive husband...and that is what gets me through from day to day. As well as the smiling faces of my kiddos.
As far as how do you get things done around the house? I don't. It's very sad, because I'm a total neat freak.....my house has gone totally downhill this past year. We desperately need to hire a housekeeper. But I think part of my biggest mistake was letting this disease take over my life....I'm slowly starting to try to tackle messes each day. It's important to not overdo it....but I'm finding pushing myself each day to do just a little more than I think I can do is helping a lot. It also helps because I feel like I actually got something done.
You can write to me anytime you want too....it's a tough disease to have because it's not visible. You "look" fine...so many friends and family, even Dr's don't understand what you're going through. You can talk to me anytime.
((((((hugs Wendy)))) I can totally relate.
I take Vicodin now only as a last resort and I take a half at a time. And I try to never take them two days in a row.
But I would rather live with the pain then go through w/drawals again.
Like Wendy said- a lot of the pain meds have what is called a "paradoxical reaction" in some people. Gary had that bad- sounds like Wendy too. Pain meds can actually screw up the pain receptors in the brain and you become overloaded with pain. The more meds you take, the more pain you feel.
Then the more meds you take, the more addicted you become.
I am not trying to scare you, but in a way, I wish somebody told me this and I would have never ever gone on Opana.
ITA agree with what Wendy said here
It makes it so you doubt yourself. Don't!!
Another good supplement you should research is MSM. My MIL (also has Lyme plus was diagnosed w/ fibro for years prior) and I were taking that for years before we found out we had Lyme. And it is really good for joints. I stopped taking it when dh was diagnosed because there was just not enough $$ to go around. LOL
But I swear it helped.
Hang in there!
And seriously- one day/hour/minute at a time...
I take Vicodin now only as a last resort and I take a half at a time. And I try to never take them two days in a row.
But I would rather live with the pain then go through w/drawals again.
Like Wendy said- a lot of the pain meds have what is called a "paradoxical reaction" in some people. Gary had that bad- sounds like Wendy too. Pain meds can actually screw up the pain receptors in the brain and you become overloaded with pain. The more meds you take, the more pain you feel.
Then the more meds you take, the more addicted you become.
I am not trying to scare you, but in a way, I wish somebody told me this and I would have never ever gone on Opana.
ITA agree with what Wendy said here
I get that all the time- but you don't look sick.
It makes it so you doubt yourself. Don't!!
Another good supplement you should research is MSM. My MIL (also has Lyme plus was diagnosed w/ fibro for years prior) and I were taking that for years before we found out we had Lyme. And it is really good for joints. I stopped taking it when dh was diagnosed because there was just not enough $$ to go around. LOL
But I swear it helped.
Hang in there!
And seriously- one day/hour/minute at a time...
neetdesigner
Well-Known Member
Thank you so much everyone!
We had planned a short vacation at the beach early in the month and I think it worked out to be the perfect time for us to go with this diagnosis I just received. I just want to take a few days, be with my family and clear my head.
My biggest issue right now is just overcoming the thought of "it's all in my head". That part makes me feel like a hypochondriac.
I will be back on Friday!
Have a great rest of the week everyone! Hugs!
We had planned a short vacation at the beach early in the month and I think it worked out to be the perfect time for us to go with this diagnosis I just received. I just want to take a few days, be with my family and clear my head.
My biggest issue right now is just overcoming the thought of "it's all in my head". That part makes me feel like a hypochondriac.
I will be back on Friday!
Have a great rest of the week everyone! Hugs!
hondachicc
Well-Known Member
NeeNee...You go enjoy!! You deserve it!! I have heard so much about this being "in your Head" desease...NOT TRUE...and You stop thinking that!! I am sure that they used to say that about Cancer too!! No one but YOU knows the pain you are in! so no one has the right to say it's in your head!!
and (((Hugs))) to you and to Wendy too!
and (((Hugs))) to you and to Wendy too!
clarabear
always chatty at the O!!
Don't let anyone tell you pain is in your head. I know a girl who kept going to see a doctor for back pain. the doctor refused to do an MRI or anything but felt it necessary to tell her that it could very well all be in her head. Little did she know it was all in her head because she had brain cancer. If you feel something in your body awknoledge it and just do what you need to so that you get the treatment you need. The biggest thing is to find a doctor you like and that gets you and can help you get the care you need. Too many people won't switch doctors because they feel bad, it is too hard to change, they've always seen that person or any number of silly reasons. So, just do what you can to have a doctor you trust and who listens to you.
Enjoy your trip. Hopefully you are able to get some relaxing in so that you can tackle life once you get back but not anytime before then.
Enjoy your trip. Hopefully you are able to get some relaxing in so that you can tackle life once you get back but not anytime before then.