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Mar 28, 2015 9:43 PM

Years ago after slipping on a wet floor and falling flat of my back, striking my head twice as it bounced up & down, I spent nearly 2 yr with doctors to be told the "tingling & numbness in my left temple was trigeminal neuralgia of unknown cause. It never fully went away, but up until recently it had begun to preclude migraine headaches.

Not anymore. Over the past 2 weeks it follows on the heels of the tremors, tingling, stinging pain & (sometimes) numbness &/or temperature or color changes from my neck to finger tips (esp right hand), which the ER dx as cervical radiculopathy. But the trigeminal neuralgia symptoms now spread to include from the lips & nose to the left ear, then up the scalp and down the neck. Weird! Scary too.

But let's not stop there. New on the list is waking with tingling, stinging pain in the left foot and toes yesterday morning (out of the blue)! I kept feeling like a piece of glass was cutting into my toes. It was pain unlike anything I've ever had. As the day wore on it spread across the bottom of my foot, up the back of the heel and to the top of the calf. Then I noticed I had a severe pinching in the lumbosacral area, and the low thoracic area. And the thoracic area is constantly tingling from the spine towards the right side. I went to sleep with it going on.

Today was a repeat of the whole thing. I was driving and my feet (both today no less) were feeling almost numb, to where I had to pull off and let my husband drive. I couldn't tell how much pressure I was placing on the gas or brake pedals by touch, because of the tingling!!! My husband said I was driving different too, slower.

The neurologist examined my reflexes and strength again last week. He said I'm continuing to have changes that point towards MS. I know I'm getting weaker. I could barely push the public bathroom door open at the gas station today!

I am so tired of all this until I could scream. I'm scheduled for a MS lumbar puncture Wednesday. I don't want to have MS, but I want to know what all this is from. No, I need to know! God please let them find the answers! πŸ™πŸŒΌ

Mar 28, 2015 11:13 PM

Flappsy I am so sorry that you are going through this. I wish there was something that I could do to help. Will keep you in my prayers. God Bless you and keep.

Mar 29, 2015 9:50 AM

Weezie, just knowing someone cares and understands, and is available for me to vocalize matters. Thanks! Everyone on here is so supportive & understanding.

My husband said last night, "I'll be glad when you can come off all this medicine." I told him, "I doubt that's ever going to happen. You apparently do not understand that if this is MS or Lupus, or even Lyme's or just radiculopathy, its going to be present for a lifetime! Just when I think he's being so supportive and understanding he says crap like that, which shows he doesn't understand or comprehend at all. πŸ˜”

Mar 29, 2015 12:07 PM

FlappsyLady, my heart aches for you. It it so very difficult to continue going through life every day and keep having new, unusual, painful and scary symptoms. (Especially when they progressively get worse). I've been having a lot of flare ups lately and I'm sure stress plays a part in that. My hair is falling out, I've got a migraine (again) and went to bed at 6:40am and woke up at 8:02am. I'm exhausted. I hope you get the answers you so desperately need and want so you can cope with what you are dealing with. I pray you do NOT have MS,but if you do, I know that with your faith and your outlook, you'll be alright and you have me and many, many others to lean on. You will be in my thoughts and prayers, FlappsyLady, I'm rooting for you. πŸ’•πŸ˜ŠπŸŒ»πŸ™πŸŒΊ

Mar 29, 2015 5:12 PM

Flappsy I know what you mean about your husband understanding what you are going thru, my husband doesn't understand never has. If he gets anything wrong with him though it is worse than anyone else.I told him once he had a kidney stone that how would he like to hurt like that 24-7,365 day's a year. Because that's what I live with all the time. I guess that was mean of me but I can't ever make him understand. He gets mad at me all the time because I don't ever feel like going and doing any thing. I hope you find out what is going on knowing is half the battle . Alwayz have you tried taking Biotin for your hair loss, I was loosing some of mine last year I started using biotin and it has helped.Just stay strong in your Faith and you will get thru this. Will keep y'all in my prayers.

Mar 29, 2015 8:43 PM

I will pray for you. However, an MRI should confirm MS. Unfortunately, there could be complications with the lumbar puncture if you have MS. The puncture did not heal immediately with my husband when he was diagnosed with MS. He was in so much pain because of the leakage, he couldn't sit up.

Mar 29, 2015 10:59 PM

Sending good mojo and answers for you Flap.... Stay strong, positive and beautiful! πŸ’

Mar 30, 2015 1:36 AM

I apologize that you're going through this hard time. I understand kinda what you're going through. I have alot of diseases that are extremely painful and frustrating. And things continue to get worse because each time I see 1 of my doctors it's seems that my original problem is now another. I was originally diagnosed with fibromyalgia, so after being on Lyrica and it didn't help I was diagnosed with myofascial pain syndrome so I received shots, then after that I was diagnosed with vitamin d deficiency, sciatica, lumbago, neuralgia, anxiety, major depression, chronic migraine, and occipital neuralgia. I'm 29 and I'm losing control over everything. So I understand and pray that you don't have MS ... God Bless You

Mar 30, 2015 6:28 AM

Flappy lady First let me say I'm sorry your feeling bad a prayer is said for you and family but today I know your going to have a good day maybe pain free or not but the sun is going to comeup and you will enjoy your morning cup of coffee (soda ,juice ,or what ever you drink ) and you will read this post and other ones too and realized that our pains are just a small pain compared to others and we did wake up so that's a good thing too and we do have ppl that love us and care about us too , God bless you and the rest of my FM P family love you all my brothers and sister

Mar 31, 2015 7:25 AM

AlwayZ, Weezie, Iterry, OregonHS, Pumkin, & Eddieray, Thank you all so much! This community is so great and supportive! And Eddieray, I am thankful for what I can still do, see, hear, etc. I've always said, it could be much worse. And no matter what, God's beside me all the way, and all of you too!

I was pretty bummed out yesterday so I stayed offline and focused on our new dog. I had my orthopedic follow up to the ER (tremors/cervical radiculopathy) yesterday morning. They took xrays of my full spine and said they saw no changes and the fused cervical spine is solid. When he left the room I showed my husband where the disc above the fused ones (c3) is overlapping slightly at the front.

With e-format records every doc I have can see everyone else records. They knew I'm going for a lumbar puncture tomorrow and have written me off saying, "you just need to go forward with that, its likely your problem. We have nothing to offer you here.". I told my husband I won't go back to them. They're suppose to be the best in this area.

I also saw my psych yesterday and he said my blood work shows I'm still to low on the serotonin, so he used it again. He could tell I was agitated and I told him about the other appt. I told him my husband and I are wondering if we should seek care outside this area. He replied, " maybe you should." He's the one who referred me to an endocrinologist for my thyroid.

After a fairly ok nights rest I'm focused forward one day at a time. I'm scared of having the needles in my back tomorrow, trying not to freak out. I'll be glad when its over! My dog is waiting to play ball so thanks again everyone!

Mar 31, 2015 8:46 AM

Flappsy I am sorry that you are having such a hard time with Drs,they can be so cold and uncaring toward patients like us. They immediately lump us to gather with the drugies,only after pain medications. I know it's unChristain and may God forgive me for feeling this way but I wish that everyone of them had to walk in our shoes for one week. Then maybe they would be more understanding and try and find solutions to our problems. Sorry for venting. The spinal will be OK you are going to do great thru the procedure. Just stay strong in your Faith and he will be beside you every step of the way.

Mar 31, 2015 9:19 AM

FlappysLady81 you're so welcome. I'm still praying for you. I'm glad you were able to get some rest. I agree with your psych saying maybe you should seek help outside the area. For me that helped a lot. I'm from Pensacola and I went to a doctor in ft walton. The out come of that was good because after three years of seeing my neurologist here in Pensacola he kept saying my problem with my neck was due to my fibromyalgia, well after seeing the new neurologist in ft walton he did x-rays and discovered that my spine is growing backwards which is causing me the chronic pain in my neck and back. So I understand your situation and I'll keep praying for you and your family because I know that your health issues affect them also. Like I know my family suffer from me and my issues. God Bless you and your family.

Mar 31, 2015 9:21 AM

Flappsy I have been meaning to ask you what kind of dog did you adopt? I have a German Shepherd service dog, a Dorkie, and my husband has a Chihuahua for his asthma. Yes it really works, you have to get the opposite sex from the person who has asthma and they have to sleep with it.

Mar 31, 2015 12:06 PM

Weezie, we know it breaks the golden rule to wish things like that, but hey we're only average humans. πŸ˜‰ My dog is a 1 1/2 yr old Jackapoo. I didn't realize how much I missed having one. He's so entertaining, especially eating. He pulls food from his bowl, a piece at a time, and he hops while running like a bunny rabbit!

Pumkin, I feel like the doctors here are more concerned about being sued if something goes wrong than they are about trying to help. I've never sued a doctor but there's been 3 times I could have. I think if I go towards the much bigger cities I'll probably stand a better chance.

Mar 31, 2015 12:08 PM

Oh and thank you! Prayers mean a lot. And I'm praying for you too. πŸ™πŸŒΌ

Mar 31, 2015 4:48 PM

You're welcome and visiting a another city is worth a try. I think second opinions or just seeing someone else is always good just to cover all angles. I know personally second opinions and seeing different doctors has definitely been a help. Just this year I was seeing a pain management doctor and my other eye doctor referred me to a different 1 and the 1 he referred me to showed me different exercises to do that would help with my pain in addition to giving me names of herbal meds that would help, instead of just prescribing narcotics which now has me with chronic constipation.

Mar 31, 2015 6:29 PM

If I could get over my needle phobia, I'd consider acupuncture. My sister did dry needling and said it was painful. The only thing I hate worse than needles are spiders! 😨Lol

Mar 31, 2015 9:11 PM

Flappys, I agree A doctor out of the "local group" is a good idea... The hospital in the town I go to has EVERY doctor in their control and several good doctors have left. The imaging at the hospital is horrible so I always request them to send me to Epic 2.5 hours away but worth it. Today I signed releases for ALL my medical records to be sent to a new pcp that is farther for me to drive (and worse driving conditions in the winter) but OUT of the system that I have been in for 25-30 years! Ready, oh so ready for a change and excited about it!! I'm hoping you are able to find a new circle of care Flappys😘

Mar 31, 2015 9:19 PM

That's great OregonHS! I hope to find one soon. Right now I want to focus on the neurologist and endocrinologist. Wishing & praying you get the best! πŸ™πŸŒΌ

Mar 31, 2015 11:47 PM

Dry needling is basically the same thing as accupuncture. Just different credentials/training.
I enjoy accupuncture and feel that it helps. Typically there are just a few points that hurt going in or coming out but most of them you don't even feel. The needles are tiny.

Apr 01, 2015 5:24 AM

Does it resemble EMG's? Without the jiggling of the needles?

Apr 01, 2015 6:29 AM

No. They put the tiny needle in. It's just in the skin. Not through it. Then you just lay there for a while relaxing. You can't feel the needles once they are in. Even the ones that pinch going in. Just places like finger tips and between the fingers hurt to apply them. After you lay there relaxing the needles sometimes push themselves out when they are done. Otherwise they are pulled back out. Also painless. I only had removal hurt one day when I was particularly sensitive.

Apr 01, 2015 12:55 PM

It wasn't painless to me Aliya. I think because I've been stuck so much it just gets worse each time. But i also have some areas on my legs that are oversensitive when i shave, its painful. I cried but still recited The Lord's Prayer. They had to pull it back out. I'm in a recovery room now and will be here until 4. No more pain but some discomfort. They had me on my stomach, semi-rolled up onto my left hip and the right knee bent up...awkward. I think that's why my right back hurts most. Just oh so glad its over!!! πŸ™πŸŒΌπŸ™Œ

Apr 01, 2015 4:20 PM

I was talking about acupuncture not the spinal tap.

Apr 01, 2015 5:09 PM

Oh, lol...fog brain I claim! Thanks. I will look into it. Emg don't hurt me too bad. But needles in my back but be my kryptonite. I just realized how much daily pain I can tolerate, even after being on my feet all day. But needles in or near my spine hurts, probably more than most people. Thanks again Aliya. πŸ™πŸŒΌ

Apr 06, 2015 7:15 PM

Got an e-notice today. The orthopedist has decided to refer me back to pain specialist for my spine (headaches, osteoarthritis, & all). That's good at least, because I like & trust him. My follow up on the lumbar puncture is next Tuesday. I'll be a nervous wreck by then. πŸ™πŸŒΌ

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