All my symptoms exept twoi can link to fibromyalgia. My question is I will be walking and my legs just come out from under me and I fall is this normal with fibromyalgia or is it something else I also haven reflexes in my legs you help is appriceated thanks in advanced. Also I am in the midle of the worst flare up I have ever had has almost got me in tears what can I do to help make it through this thanks
Boyce,l welcome. The legs giving out doesn’t sound like fibro to me unless you are just in an incredibly weakened state. And for it to come on so suddenly- ummmmm, cause for concern in my humble non medical opinion. Have you seen a neurologist and been worked up for stuff like MS? I would push for that if I we you. Anyway, welcome and enjoy the site.
Hi Boyce, & welcome, I’m so sorry you are having such a hard time. I saw that you were just recently diagnosed, part of living with fibro is having other things ruled out, unfortunately this takes time and many trips to the dr, as well as many trips to specialists. Have you discussed this with your dr.? If not I would say that is a good place to start. As MB has stated seeing a neurologist to rule out MS is something most of us have had to do. Fibro can mimic soooo many other conditions anytime a symptom is new or cause for concern a trip to the dr is key. Finding a dr. That understands fibro, and is willing to work with you is also very important.
How to get through a tough flare… Well that’s a million dollar question, as you become more familiar with what makes your symptoms worse you will also learn what works for you , I can only say for me I have learned how to not overdo it… I also saw you work full time? Can you decrease your hrs,?
When I first started taking Savella, I noticed an improvement within 2 weeks
Take one day at a time, limit what you do, my heating pad & hot bath helps,
I wish I could say there is a magic treatment that makes it all go away, but it’s a combination of so many things, and what helps one may not help another, you have to learn what helps you best.
So glad you joined us
Stay strong
Hugs & blessings
I have had a lot of test run have not had one run for ms yet or seen a neurologist yet but the pain dr said something about it I plan on talking with him more on it when I go back. I have had meny mris cts and X-rays they only thing they showed up is the every one of my therasic vertebra are messed up from a fall when I was 17 but the back sergeant said surgery would not help me because the pain is to wide spread and did a few more test and then told me that I had fibromyalgia and there was nothing she could do for me and sent me to the pain specialist and he tryed one injection in my spin and that is part of what has cause this flare up it has been 4 weeks since I had the injection I went back to him last Monday and that’s when he asked if I had see a neurologist gear and put me on savella and said come back in 30 days an if that’s not working he his going to put me on lirica
Hi Boyce,
So sorry to know that you are feeling this way. I hope that you have discussed this with your Doctor, and I hope that you have asked to also see a Rheumatologist, if you still feel that you need more care after the neurologist. Keeping a running list of symptoms will help you when you get there.
There are some good Drs out there, just have to find them. In my opinion, they are the key to being as well as we can possibly be.
Wishing you well,
SK
Wish I knew a good dr in the north east part of arkansas. I am just so stressed out about all of this and starting to get depressed I don’t know what to do any more and scared I am not going to be able to stay working much longer this pain anolg with all the other symptoms of this fibromyalgia has taken my life from me I can not really tell u the last time I felt even half way good and for the last two days I have had a bulge on the back of my neck about the size of a base ball and don’t know it is but can not even touch it with out extreme pain. I am sorry for ranting on I am just about at my wites end and don’t know how much longer I can go on with out some kind of relief
Hi Boyce, I have had leg trouble for 2 yrs. now. They have a numb feeling, it started in my feet and gradually creeped up to mjd-rhigh. Docs don't have a clue. One day in a restaurant restroom all of sudden I couldn't walk. It was like I had no muscle control. My husband had to come in and get me. He carried me to the car and into the house when we got home. The next morning I was back to normal. I never had that type of episode again, but they have given out. I've fallen 4 times. I don't know if you have numbness, but if you find out what wrong please post it. As to your bad flare, if you have a hottub they help tremendously. Plus you can excercise in the water without pain. Next best thing, a warm bath. I find heat helps, it doesn't take the pain away but it's soothing. I use a heating pad under my hips and a heated throw on my legs. Hope this helps a little. Also sounds like you need some pain meds for breakthrough pain. Good luck :)
Here are a few things that may be of help to you, Boyce
http://www.healthgrades.com/rheumatology-directory/ks-kansas/topeka
http://www.healthgrades.com/rheumatology-directory/ks-kansas/leawood
http://www.healthgrades.com/neurology-directory/mo-missouri/north-kansas-city
I hope this has helped you! I would like to see you get some good care!
Best to you,
SK
boyce, i have had this for 30 yrs. and yes i have had those episodes, where my legs give out and i fall....especially down flight of stairs....they sort of shake before they give out....i am just really careful and always look down when i'm walking
it happen mostly when i am tired....a hot tub works for me,,,also i take vicodin for pain
I have to use a cane that my neurologist prescribed for exactly that reason. Well, my hips give way also. Unless you have seen a dr, you can soak in Epsom Salts or rub Peppermint Oil into your affected areas. Takedown Tylenol for the pain.
Get to a dr or a pain management clinic. I have heard so much good about chiropractors, I think I an going to see one myself. Hugs and good luck Boyce.
I just wanted to mention that new studies show that opiates do not help people with fibro in the long run. New drugs like Nucynta help with nerve pain associated with fibro. FYI
I to have numbness in my feet and legs at time Charlie I also do not have any reflexes in my legs at all i was at the pain clinic last Monday for the 2 nd time and the first thing the dr asked me was if I had seen a nurosugent I think he may have misunderstood me I told him no but I have been to a back sergeant and that is were I found out every one of my thoracic vertebra was messed up but they said surgery was not going to help me because my pain was to wide spread and they said u have fibromyalgia and sent me to the pain clinic and my first trip there they wanted to try an injection in my spin well just to let everyone know don’t get on because it has made me 10 times werse and I think it is part of y I a
Have had this bad flare up for the last 3 weeks of course I don’t take it easy and keep going to work and just pushing my self harder and harder every day I just can not afford to not go to work so I don’t know what to do
Hi Boyce, So sorry for your new diagnosis. You sound very stressed out and having many emotions. This is normal. But sometimes the emotions can cause physical pains if you do not have an outlet for them or are unsure what the emotion is. There are some good books on handling chronic illness and the emotions that go along. Amazon has many and some are workbooks that you can write out your feelings. I find journaling helps--just write out all your fears, angers, ect.... I know that Lyrica causes me to have dizzy spells where i feel like my legs give out. Maybe it is a med side effect.
Boyce, I remember those first few flairs and how I felt like I would die from the pain. I failed the first few meds and became depressed and felt hopeless. But after two weeks on Lyrica I felt great. So please do not give into despair. You will find something to help. Other things like swimming, hot tub, baths with epson salt, relaxation, yoga-there is a book called, Yoga for fibromyalgia that is good. Hope this helps
I used to have the same problem with my legs giving out suddenly. I would either fall or simply not be able to stand up. It was like my muscles just went out on me. I even had to be carried to the bathroom and use a wheelchair for a year. I was also diagnosed with cmv a virus that feels similar to mono. I don’t have this symptom often anymore, it’s rair now to fall. Sometimes just muscle weakness but not to the point of falling or not being able to walk. Taking hot baths and light exercise gradually built up over time (just don’t overdo it) helped a lot with pain meds added. Hope you feel better soon.
I have Fibro as well and that started happening to me last March and they still aren't sure what's causing it. They have done MRI's, CTs', nerve conduction tests, etc. I have had to use a cane to help me walk since the beginning of April 2012. It took a while to get used to but it has helped me from not falling as much. I am only 23 so it felt kind of embarrassing having to use a cane all the time but I got used to it. My cane is pink and I even named it, lol, I know it sounds silly, but its name is Sherry.
The hardest thing for me is to not over do it I am just one that can’t sit still I need to learn to but just can’t if I sit still I can’t get my mind off the pain so I get up and go out to my shop and do something to get my mind off ot then I regret it when I sit down cause I hurt a hole lot more I just don’t know what to do I am slowly loading it not shur how much of this I can take
All of my joints give out like that, especially my knees. I didn't know until recently (I'm 46) that I was born with Ehlers Danlos Syndrome which is a genetic connective tissue disorder. It causes the body to make bad collagen. A lot of people with EDS have problems with back, hips, knees and more. I have fibro too and it's likely related to the EDS for me.
http://www.nlm.nih.gov/medlineplus/ehlersdanlossyndrome.html
Hi Boyce and welcome to our group. It's nice to have you here. I hope you'll find a lot of information and support for your fibro issues. I think the people here are wonderful at helping each other out.
I just saw my rheumatologist yesterday and I mentioned that my knee suddenly will buckle and I'll fall. He was concerned and wants me to see an orthopedic doctor because this could indicate tears in the cartilege (I think it was cartilege) in the knee. All I know is that it's a pain in the you know where, and always seems to happen when I'm on stairs. So I hope this was of some help to you, Boyce, although your issue might be something completely different. Honestly, it's best for you to see a doctor and ask about it.
I'm really sorry about you having a terrible flare. I find that Lyrica (with Nortryptiline at night) helps me to deal with some of the fibro pain. I also slap on a ton of Salon Pas pads (available over the counter at your local drug store.) Ice sometimes helps me as well. And sleep. Plenty of sleep.
I surely wish I had a better answer for you on dealing with the pain, but fibro is a real bear like that.
Gentle hugs and wishes for a better tomorrow for you,
Petunia
Boyce, one thing with fibro: it's incredibly important that you learn how to pace yourself. I think that every fibro person on here has said something almost exactly like you have about doing and doing and doing...and then the fibro goes mad on us. I know I got MUCH worse when I worked incredibly hard, with long hours at my last full-time job. So, although you love the work in your shop, you need to learn to slow down. Do less time in there. Take breaks. Sit down in there if you can. If you don't, then the fibro will just go mad on you and cause you incredible flares, whereas if you slow down and pace yourself, you can usually manage to have less intense flares.
Super important lesson to learn in regards to fibro and a hard one for most of us to have observed,
I think naming your cane is a great idea, KJF! I love it! I've already named my new car, "Henri the Horse," after a line in a Beatles song, so I'll have to think of something nice for my cane (which is colorful, with butterflies on it.) Your pink one sounds very cute, btw!
I have every joint give out for no reason other than fibro. My thought is the spasms cause it. In time you will learn to be still. I had a veryhard time being still at first too, but eventually I had to, my body gave me no choice. Let yourself be still get a few good movies. I would hate to have you end up with no choice.
Blessings!