A small update on my situation so you guys and girls can see where this is coming from. For some reason since about November my condition has been getting rabidly worse, The pain was mostly localized in my shoulder and has now localized in my hips/lower back as well. As of today i'm to the point where I can't sit upright for extended periods of time, my limit is about 2-3 hours and that's in a chair with a back massage and heating pad. Aside from this i'm spending about 2 hours in the bathroom a day due to ibs. I feel mostly awful, but in all this I've had a lot of time to think since i can't rest very well and I wanted to get some feedback on something that strikes me as a little odd even for fibro.
So in may I started having a new symptom. Now I've had tingling/falling asleep in my hands and fingers sometimes for a while but this has been kicked up a notch. I've been waking up from sleep for no other reason than my entire arms or legs have gone numb. I have been sleeping on my back, arms at my side nothing pressing, no heavy blankets even and from the shoulder down my arms are so pins and needles painful you'd think i'd slept under with them under me or something. This was a little scary, but I've shrugged it off, I told the dr and he didn't seem to think much of it.
Now I've started waking up with everything from my tailbone down numb, and I'm starting to think something else may be going on here.
So my question is this, is anyone else to the point with all the symptoms and pain that new things just kinda get brushed to the wayside? I mean when you always feel like you're dying or should be dying, a new version of it doesn't really feel scary anymore. I'm not sure if i'm explaining this correctly, but i guess I feel desensitized to what's happening with my body, everything's to such an extreme point and has deemed to be "okay" by the dr as just being part of fibro, There really doesn't seem to be any urgency or fear of really anything anymore. Has this come to trouble anyone? have you had a symptom that you passed over and found out later that you shouldn't have?
I'm so sorry to hear about all of the pain you have been in. I can relate. The usual fibro pain flares on, but as time has gone on my flare ups have gotten worse and more consistent. I also have developed similar symptoms as well with the painful tingling in my limbs that can last for minutes or hours. Sometimes all day.
I also have tried to talk with my rheumy about it and he sort of shrugged me off as well. I don't think he realizes the pain the fibro brings, how terrible it feels each and every day. I guess its easy to shrug off when you don't have to live with it everyday. I am not sure what causes this, but the symptoms of fibromyalgia seem to be so multi-faceted, it almost doesn't phase me when yet another painful problem rears its ugly head.
I pray that things get better for you soon. I am always free to talk if you would like to or just need to vent! Believe me, I get it.
Isn't it awful that we can never get an answer from our doctors so when we do get a new symptom we figure there is not any hope in talking to them anyway? You are right, the symptoms come and they go (sometimes) and we are desensitized. I'm dealing with a new thing too and my husband wants me to go to the doc and I am just riding it out. Mine is hives or whatever...
I have had everything you have described above. I am so sorry you are getting dumped on so hard with all of these at once. You have to be utterly miserable in the midst of your numbness.
You do need to see a doctor though. The reason is that this numbness could be more than fibro. MS comes to mind or, as we fibromites know, it could be a host of other things. Do you have a neurologist? If not can you call your doctors office and ask for him/her to refer you to one? Not to be an alarmist, but because your "go to the doctor" button finger is broken, I'm just pushing it for you!
I went to a neurologist at one point but it was back in 2012, I know the rheumatologist i'm seeing now did a host of blood tests to check for internal damage and types of cancer but luckily nothing came back positive from it. I don't know i've done alot of reading on how fibro as it progresses can look like early lupus or ms, the biggest concern I had on the ms front was that I occasionally get dizzy or motion sick for no apparent reason, but that was shrugged off as well.
I dont know, I'm to the point now where I dont want to scare myself or be a hypochondriac but there's so much going on it feels like we're missing something, i'm not sure if that something is as small as another vitamin deficiency or what but I just feel like we're treating the symptoms more than anything if that make sense.
thank you for your support, It's been a big thing for me to see so many people in the same boat or dealing with things that I can't even imagine how hard it must be for them. I'm sorry there's so many people hurting, but at the same time its good that we're not all alone you know.
I think sometimes the dr's know how many different things it could possibly be and feel like "well none of them are lethal so whatever" It's a sad thing but sometimes I get the feeling they want us to go away cause they can't really help us. If I was just getting this from one dr, i'd choke it up to just them, but its been just about anyone i've gone to that's realized i have fibro, nurses specialists everyone.
I guess its good we have each other to try to help figure this out, huh?
With my shoulder, they did at one point do an mri of my spine, which came back "fine" I took it to my chiropractor at the time and she said that some of my vertebrae seem to be pulling to one side but besides that it seemed okay and she did what she could with that, to somewhat mixed results on my end. I guess i'm just frustrated because at 26, there is no history or reason I should be having trouble walking, and the only diagnosis I have right now is fibro. It just doesnt seem to be the whole story somehow.
I'm going to have to go back to see my GP soon for refills of medication, I'll try to impress upon him that this symptom is growing and continuing to get worse and see if I can't get somewhere with it. I know that something isn't quite right with this, but I just started lyrica earlier this week and am hoping maybe if something helps the pain maybe it'll help things settle down a little bit. Every dr visit is another bill you know?
Hi Maradia, it can be so awful how all this can be happening and nothing shows … I’m glad for you MS was ruled out !!! Fibro does affect the central nervous system causing a host of problems, have you tried Lyrica ?
Keep looking for ans, clues, possible treatments, things that make it better ! And when you get frustrated … Take a break, we have to rest our mind and then keep pushing on…,stress reduction is so very important, because we are always focused on our symptoms & how we feel.
I do understand exactly what you are saying…
Hang in there, your for sure not alone !!!
Hugs & blessings
dee B
Hi Maradia and welcome. I'm sorry that you have fibro and are starting to experience more fibro pains. I really think that fibro is progressive, just like in your case. As for the pain in the lower back/hips, perfectly normal with fibro. Awful, isn't it? And the hard time walking? Also fibro. Pins and needles? Fibro. Numbness from the spine down - now that one is a bit worrisome to me. i would definitely go to a doctor for it, preferably a rheumatologist who can test you for illnesses like lupus and MS. Also, a neurologist might know what the numbness is about. I do wake up with numb hands, sometimes, but never anything like you explain.
Please keep coming here as it helps to know you're not alone!
Good! Glad to hear it isn't MS, also glad to know that you're referred to a neurologist. Hopefully it's just another fibro symptom, although it's not one I'm familiar with (to that extent.)
I find that I’m more sensitive to what’s happening than when I had to push through when I worked. I did my best to try to ignore or forget the pain and fatigue and just keep going. Now that I have more time I’m much more aware of what’s happening, but like everyone else I just think “it’s just fibro” and so does my doctor. I’ve had a lot of health issues throughout my life so I tend to avoid my doctor as much as possible because I don’t want her to find something new. I guess I’m no longer really afraid of dying just worried about those I’d leave behind.
My primary points of fibro pain are in my shoulders, chest and hips although all other joints can ache terribly. I also wake up in the middle of the night and find that the arm or whole side I’m not laying on is numb, other times when lounging back, one of my legs or arms go numb. I did have a strange pain in my back that I thought was fibro but when it went on and on at the same level checked it out and found I had arthritis.
I think it’s important to track any new symptoms and discuss it with your doctor, even just to get reassurance that it is “just fibro”.
I’m sorry you’re going through so much right now. Are you taking anything for IBS? My doctor gave me something I think it’s called Trimebutol (it’s upstairs I’m down) which seems to be working for me although it gives me a stomach ache. I’ll check the name if you’re interested.
Please look after yourself, and I hope the pain has gotten better by the time you get the message