Hello Fibro suffers,
This has been a long strange journey for me. Not knowing where I belong as I suffer in limbo-land. I have been Dx with Fibro, however something inside of me is eating at me telling there is more. I was dx back in 03 with fibro. It is now 13 and I have never needed any med for it except for Tylenol, Advil. I have back issues also so is it my back? Itís somewhat confusing not knowing what they pain may be, however I can tell you that the muscle spasms and twitching Iím getting has never happen with the back issues before. I become so stiff, and cramp up that my feet and hands curls up. My neck gets so tight that it feels like lead and I get migraines. It feels like my shoulders are being pulled off of my neck. There have been a few times that the spams have made my back bend backwards and my arms go every which way. I was also dx with TMJ by my Rheumy, I have constant tingling and burning in my legs& feet alone with numbness, my feet hurt to walk on them it feels as if I am walking on the directly bones sometimes. My arms and hands will go numb and tingling off and on throughout the day along with burning sensations. I do wake up in the middle of the night paralyze and canít move until my husband picks up my legs and move them in a bicycle motion. I have numbness down my legs when you push on my SIJ bone on my back. I have vision problem, which are black spots, fuzzy, canít focus and sometimes I even see rainbow colors, double and triple vision. I get tingle in my head, and I am very heat in tolerance. I either become extremely fatigue, dizzy or nausea. I am fatigue every day; I have to nap around 2ish till 4 or 5. I donít sleep all night and I have bathroom problems. I either pee all the time or I canít pee. Sex hurts and sometimes I feel numb down there. I have no concentration, forget word, reverse words when writing, and forget how to spell simple words. My husband also told me that my handwriting is getting worse. Oh I have black out before. I have been tested for vitamin, and the only thing was my Vitamin D was low it was 8 now it is 30 I have to take Vitamin D3 for the rest of my life. I want to know why it low, but they stop looking for the cause. They have ruled out some autoimmune dieses already, I have made some posts on this board and I am on another board talking to a wonder person that just listen, however I wanted to see if anyone else had the same experiences I did and was given the same DX. I have other symptoms that come and go, also but these are the ones that stay around all the time. Thank you
Last edited by 2young4paininOH; 07-12-2013 at 09:01 AM.
Hi, I get many of those same symptoms . The tingles throughout my whole body and the spasms that curl the feet and back. Those spasms scare the hell out of me because the pain is off the charts and once they start it can go on for days. Soon as they show signs of happening I take muscle relaxers and try to work them out using my Thera Cane.
The one symptom you get that should be addressed separately from fibro for sure
is the tingling and burning in your legs and feet, neuropathy and it's causes comes to mind and should be ruled out.
Hang on for the ride, fibro seems to always keep us guessing.
Last night was a ride from hell, I was woke up from a dead sleep at 3 in the morning crying and in extreme pain. My back and legs hurt so bad, I could barely move. My husband helped me up and I headed for the couch where the heating pad is. After some medicine and heating pad and me rubbing my legs I was able to fall back to sleep around 5ish. I can't stand this ride in limbo-land. I am headed to the neuromuscular doctor on Monday the 15 of July. I sure hope he can give me some answer. You said you have a Thera cane what is that and what do you use it for? I do not have any kind of cane yet or muscle relaxer yet either, I am hoping they will give me some on Monday. I cannot understand why they haven't but then again I don't like to take medicine either. MY PM is more into the injection kind then anything else and I refused to get the RFA right now because I just found out I have clumping of the nerve roots in the cauda equine, I have had this sine my MRI in 2011 and no one told me, however long story short my MRI was all screwed up also. What are some of the things you do to help with the pain when the flare up are so bad that you just want to crawl in a hole and die?
Good morning, sorry you had such a rough night. I tossed an turned alot too due to back pain. Finally got up and put the TENS on. Do a search on TENS. It's a nerve and muscle stimulator that sends signals to block pain. a gentler and less invasive external form simular RFA. Helps some and not others.
You'll have to search the net on TheraCane, the rules here prohibit a direct link to anything. I use it to work out the spasms and knots in spots that can't be reached by hand. Neck back etc. Great little tool and unfortunately gets lots of use by me.
As far as any type of meds, it took me forever to get any scripts from my dr. The word begging comes to mind.
Sounds like much of what you're feeling could be from the back issues, your appointment monday might find you some answer.
For relief I use the 2 things mentioned above, mild pain relievers (reading here it seems anything stronger isn't the answer for relief) topical lotions and oils, I go for the more natural remedies. Topicals are short term but do aid in getting some sleep.
Melatonin for sleep every night.
There are plenty of discussions here on natural, herbal, vitamin and mineral supplements. Keep reading and you'll find all kinds of suggestions. Much of it is trial and error, we all respond differently and that is part of what makes dealing with FM so freaking difficult. Sleep is the most important because fibro feeds on fatigue and stress, and of course in pain we don't sleep well and that causes stress... starting to sound like a merry go round ride yet?
Try and make the best of life as it is, easier said than done in the beginning of a FM diagnosis.
Hello, I thank you for the reply, I have the tens unit and HATE it. It reminds me of the pain I experience at times. that electric shocks I feel that send pain through my veins with volts of electricity running through my body. No thank you. My rheumy just gave me CO Q10 100mg to try for muscle pain, verdict is still out. Have not been on them long enough to give opinion yet. You know my PCP use to offer me muscle relaxer before when I would go in there for headache and I would tell him I did not want them now I need them to help me relax my muscle and not one doctor had offered them to me and I wont dare ask for them. For some reason doctor intimate me. They tell me this is what it is and how I need to do something and I do it, and don't complain about nothing. That is why I am here LOL. I need to learn how to stand up for myself and tell them that I am paying them and they need to listen to me also and hear me out, but I can nerve mustard up enough courage to do this, maybe Monday I will be able to if I see thing are not going in the right direction.
All I have to say is this Fibro stuff SUCKS one of the worse parts is when my husband goes to touch me and I feel like he hit me and he does not understand that it hurts so much. I wish there was a way I could make him understand a little better.