Help me please, I am in so much pain and feel worse everyday!

[sportygirlsmom]

Okay, I don't even know where to begin. I am 36 years old and most days I feel like I can't get out of pain. I have so much pain that I can't say that there is anywhere that doesn't hurt. The last time I remember feeling like I could do anything at all with a normal level of activity is Jun 09. I started with lower lumbar pain that went down into my legs and then the numbness started was sent to a spine Dr who did MRI of lower lumbar and T spine iy did show several herniateddisc. But he did some other x-rays that showed a abnormal curve in my lower back and sent me to a neuro doc who I seen many times. He has placed me on Tramadol which doesn't help. The neuro doc thinks that I may have fibro or MS but has not told me for sure what he thinks. I only know that because of what a nurse told me when she called me with blood test results, I was wondering about what anyone could tell me about what I am experienceing? I have terrible pain, my muscles feel so tight and they look tight or swollen in my leg and arms really everywhere. Now I have started having a pulling in my face on my right side in my orbit area. My left eye feels like it is spasming and I have a lot of trouble swollowing.. I just dont know who to turn to my family is so sick of hearing about me hurting but no one can understand just what pain I am in. I can't clean my house and there are many days that I can't even get out of bed. Just to type this is awful. I also have alot of balance and cordination problems I fall around like I am drunk and do not drink. I also have the sensation of blood rushing through my ears. Worst of all I feel like my nero doesn't listen to me about my symptoms he seems to cut me off when I am trying to talk to him and I don't know what would be a true emergency? I just need soemone who can tell me what this could be or what to do. The nurse read that my next visit in Dec he may be going to add lyricia????? I just would love to have someone to talk to. Thanks for any help in advance and sorry to write a book about me venting......

[dustybrown]

Hello,
I am so sorry to hear about your troubles, sportygirlsmom. My doctor once was considering MS as a possible diagnosis for me because I have a numb left foot- (it turned out I just have nerve damage in my spine). It still could be a possibility, but it is very unlikely. From what I have read from your post, and forgive me if I've missed something (I get a little fibro foggy in my thinking towards the end of the day), I noticed you didn't mention any of the proper tests that need to be performed to diagnose MS.

From what I have studied, in order to diagnose MS, a spinal MRI and a Brain MRI should be performed to look for lesions. Not all cases will show them, so most times they will need to perform a spinal tap to test the spinal fluid to be sure- once and for all. A neurologist is qualified to do these tests and diagnose and treat this disease.  

Now, several herniated disc can cause a heck of a lot of pain sweetie and nerve pain is the worst kind. I have it too, so I completely understand where you are coming from. Fibromyalgia is kind of a body's reaction to pain trauma in a sense.

I too tried Tramadol and didn't have much luck with it. Lyrica worked much better because it is designed to target neuropathic pain, or pain that comes from nerve dysfunction, damage or disruption to the central nervous system, which is what has happened to you by having your discs herniated.

Also, you mentioned having trouble swallowing and your having strange eye symptoms. I would ask to have your thyroid tested just to make sure that is functioning properly. Have them do a complete thyroid cascade TSH, FT3, FT4 and the Antibodies if your doctor will do it just as a precautionary measure. Good luck to you!

[sportygirlsmom]

No , what would a parasite do? No my neuro doc has done nothing but blood work and I asked him for a brain MRI and he seemed a little upset. He said "let's wait until your next appt and see what happens then." I felt like saying thanks for your help 6 weeks of more pain." My spine specialist did tell me about the disc pain and curve and he sent me to the neuro who said he didn't think it was causing the pain I am having. My neuro at my last visit was talking to another doc in training about MS and Fibro. He made me walk in a straight line I failed of course and to stand with my eyes closed with my arms out, I asked him at the end of the visit about Fibro or MS and he said I am not saying you for surely have either of them. Then when the nurse called me she read what was in my chart about the fibro or MS and the Lyrica... I don't know what else to do we live in northern KY and there are little neuro's around here.... I just sometimes feel like giving up... I am scared I am dying and at times wonder if I were just to go to the hospital if it would help? But what would it do nothing.  I hope my neuro doesn't think I am just wanting medicine for pain or what not I just want to be better!!! I have a life to live but I want quality of life as well.  I see how people look at me and those who are close to my mom or other moms at my daughters school look at me and I almost think they feel sorry for me? My voice is also very effected I am hoarse or weak sounding? I just don't know what to do. Thanks for letting me vent.....

[IceDragon]

I am so sorry that you are going through this, its really hard to cope with. I have suffered for many years with suspected M.S./.A.B.I/FMsyndrome many tests/scans/ etc but no answers. They now say I have Fibromyalgia (apparently since I was 8 - I'm now 38), but I have only been diagnosed with it since last Friday, they take their time I'm afraid. If this is what you have; I haven't found an answer for the fatigue - except to take naps when you need to - which I know is sometimes hard to do & to rest & pace yourself with what you do. The pain is helped by the right meds - keep going until they get it right  (I have been on Tramadol for over 3 years and it seems to help lessen the pain - you can also take paracetamol at the same time, ask your g.p). The best thing I take, myself to help with the muscle spasms in your legs/feet/hands/back etc; is Amitriptyline (your g.p will be able to help with this) the other is compression eg tubigrip or elastic bandage be careful not to go too tight this helps with finger, hand, knee & foot pain & spasms. Hope some of this helps, just remember you are not alone. Take Care xxx

[kmil1999]

Hi, and welcome to CFS/Fibro group.  We all feel that we can't talk to anyone.  Mostly, I think it is our nature that we are so used to giving all that we have that we can't/won't ask for help.  That is what makes this forum so great!  (on a side note: not putting ourselves higher on the priority list is something we need to learn to do. I think that is an environmental  influence on why we get sick to begin with.)  Saying this is all based on the fact that is actually what you have!

You are having concerns about your dr. & I think you are justified.  It sounds like you need to get a second opinion.  The doctor did not mention anything to you about the abnormal curve or herniated discs to you?  These can cause a lot of pain, but as far as I know, it has nothing to do with Fibro and needs to be addressed.  I am also concerned no one is questioning the spasms of your eye and muscle pulling.  It could be awhile to get into another neuro, so I would go ahead and keep the appointment with the one you have but I also would look into finding another one for a second opinion.  You can always cancle the second one if it turns out that you are satisfied when you return.  It may help if you would take another person with you when you go back to the neuro.  Over on the MS site in their health pages they have a link for preparing for the neuro appointment.  It might help you prepare for your appointment.  

If your doc is considering starting you on Lyrica, he is probably leaning to Fibro.  Lyrica is used for the nerve pain some have with that condition.  the thing about Fibro is that it can only be diagnosed when everything else has been ruled out.  I don't believe you have had enough of a work up to have all ruled out.  Have you had an MRI with and without contrast of brain and cervical area, EMG's. ANA & titers?

Didn't mean to write a book.  I know how it feels to be this desparate and the medical community isn't helping.  Hope it helps.
Hang in there and best wishes,
Karen

[sportygirlsmom]

Thank you, no they have not mentioned Lymes, and I never thought of that even being part of my problem, I will be sure to mention it the next visit. They did a CBC w/diff and a B12 level check and it was normal, but getting the results from the doctor was another story. I waiting almost 2 weeks before hearing from the dr's nurse the results b/c they thought I missed an appt. that the doctor moved me up for b/c of the way I was feeling. I left a couple messages and the nurse just put them away anyway b/c she thought I missed the appt...... I left a message the other day asking what some of my new symptoms where and if they were anything that needed to be addressed and she called me with the blood test results and told me she thought that someone had already talked to me about them, I told her she needed to check my message again and she told me just to wait until Dec to talk to him about them..... I am so afraid somedays I feel like I am dying. I have an elderly mother that we care for that is on O2 24/7 heart consition and just the age issue plus I have the most active 11 year old going on 20 daughter who I feel sorry for b/c she sees me struggle b/c we used to play and ride bike together and just all around do alot of thngs before this hit me. She seems to understand that I can't go and do as much but I try. She loves to play sports she just found out last night she made basketball team for her school last night. I used to be able to shoot and play b-ball with her but now I can go out and watch her and maybe shoot for a couple minutes but then I become so locked up and in pain. But I just am so thankful that I found this site b/c now I have people to relate to me and can talk to them b/c I hate to complain or talk about this with my family b/c my husband has enough with his job and helping to care for my mother and now alot of times he has to help me which he doesn't care. I am very lucky he is so easy going about my mom and me but I know he gets sick of me being sick.
I look so forward to forming a group that we can discuss our related conditons and help each other with something I understand we will have the rest of our lives.
Thanks again

[kinnz03]

Hello,
I can relate to most of your symptoms, except for the pain part, there was a helpful post on this board earlier I think it was endfatigue.com I found that to be a useful site, you can order a program (no cost) print it up and take it to your Neuro, I was diagnosed with CFS, I had the same NOT listening problem with my Neuro, I wanted a B12 shot to give me energy, she would not give me the shot, I found a primary Dr. that would, so my advice is if one won't listen to you there is one that will, if necessary tell your Dr. that you feel as if he is avoiding listening to you, that will open their eyes most of the time, it did my Neuro when I told her as she made a joke at my last appointment when I told her I was feeling better she said see you don't need that B12 shot, I said well I think that's why I have more energy my primary Doc is giving me the shot!! Her mouth dropped! Good luck in your journey, I am still learning about this illness, have they ruled out Lymes?