Is it just me

By theresag79 Friday, August 29, 2008

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O.k. it is going on 1 year since I was diagnosed in Sept 2008. Is it just me or does anyone else feel like when they are having an exacerbation or relapse that they need to talk about it? Do I want sympathy or just a listening compassionate ear?

I have been having numbness/burning/aching/pain in my lower exetremities. It has been getting progressively worse over the last couple of months. Yesterday was the worse it has ever been. The pain from a scale of 1-10, 1 being the least and 10 being the worst, was a 10. It was so bad it was the only thing I could think about. It hurt when I lay or sat down, it hurt when I stood to long, it hurt when I walked. I was shuffling around all day. And yesterday was open house at my kids schools so I was on my feet visiting teachers.

When I mentioned it to my mom a couple of times, she completely ignored me like I never said anything. She didn't acknowledge my pain at all. She never asked me anything about it or even asked me if I was feeling o.k. at any point in time after knowing how I was feeling or seeing the way I was walking.

My husband works a night shift, he doesn't get in the door until 1:30 a.m. and then sleeps all day until it's time for him to go to work. And when we do have a chance to talk the conversation revolves around him 90% of the time. I said something to him about it but he was so wrapped up in a situation he is dealing with at work that he barley acknowledged it.

My father is a diabetic and has feet nueropathy, so he understands. He suggested I take 2 of his prescription 800 mg Ibroprofen. It didn't even touch the pain. Today I am a 6 in pain. A much better improvement from yesterday, but still noticeable and still troubling.

When I was diagnosed, I was told that I have RRMS, like I am sure many others are told. From what I understand with RRMS you have remmisions where you are symptom free or pain free and relapses. Well I have never had a full remission. My symptoms have always been there and are getting worse. Sometimes I wondered if I have already begun the next level of MS, secondary progressive MS. I mean things are very stressful right now. And I can't get away from the stress, I can only deal with it and remember that I am blessed but it doesn't make the stress go away. Could this stress have pushed me over to the next MS phase?

I know if I am going to get any advice on this it will be I need to discuss these symptoms and feelings with my nuerologist. But I don't have any insurance and right now I can't even afford to go to the clinic. I am not taking any drug therapy and even though I was diagnosed in 07, I have been having symptoms since 01. And I know there is no use in complaining if I am not going to go to the doctor to check it out. I just needed to let it out somewhere (this website) where I knew others would understand.

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Comments (7) | Add comment

Mandy Crest, Health Guide

8/29/08 7:29pm

If what you need is someone to lend an ear, you've come to the right place! Here, an entire community of folks will do just that.

I'm not a doctor, but I believe that many people with relapsing/remitting (I am among them) do not always come back to baseline between bouts. If you still have relapses that come and go, that fits the definition of relapsing/remitting MS rather than progressive. At least that's my understanding.

By the way, we all feel the way you do about needing to vent. We don't want or need to vent every day, but sometimes, it is an absolute necessity. I know I always feel better afterward!

Hope it helps to know that you are FAR from alone!

Lisa Emrich, Health Guide

8/29/08 7:53pm

Hi Theresa,

I just looked through and answered some of your questions posted here months ago. You should be receiving notices soon.

It really is important to be seen by a neurologist on a semi-regular basis. Just like Mandy said, many MSers do not experience a full return to baseline after each relapse. I carry residual symptoms from each relapse.

However, there are symptoms which can hang around almost constantly but which can be relieved by appropriate medications. Many of these medications are available as generics.

Please, if you can, go into the clinic to be evaluated by a physician. In the meantime, we are all hear to lend an ear, and yes, I believe that when some of us are experiencing new or increased symptoms, we find comfort in talking it over with understanding friends.

Lisa

rwboughton

8/29/08 8:53pm

With RRMS you may become completely symptom free, or you may not. It depends on how extensive the damage was from your attack and to what extent things were able to heal. I was dx'd in May 2007 and still have most of the same symptoms I had when dxd, though somewhat milder. I also have good days and bad days. Today, for instance, I am so fatigued that I can barely stay awake, my feet are burning, and I can't walk a straight line to save my life.

Sad but true, it seems like people--even people close to you--get sick of hearing about this. Sometimes we just want them to ask, just be interested. It's not that we want to ruin their day or whatever. But that's how it goes. I know exactly what you're describing when you say your husband ignored your symptoms. My wife generally does her best to ignore mine too.

Susan Cagley

8/29/08 11:58pm

I have been living with MS for 19 years now and it dosen't seem to get any better. But the people here can and will help you as well as others. You need to be careful about trying to join any other group or MS site, I made the mistake of joining one a few years ago and will to say the least, they made me feel like a fool. I want get into what happen now maybe later but, it made me very leery about joining another. I came here and I found others who care and I watch for a year before posting. They are a great group and I glad I did.

callmetroubles aka Susan,

Lisa Emrich, Health Guide

8/30/08 5:36pm

I can relate to this. When I was first diagnosed I lurked and posted on a message board (which doesn't exist any longer). It was helpful but sites like this one didn't exist.

There are many, many MS forums and message boards and each one seems to have it's own flavor, style, and cliques. The tone of a community is so dependent upon those who participate.

I know at least two other participants in this community from the MS Blogger group at large and I can sincerely say that these ladies are good folk and very real.

I'm glad to be here and hope that you both continue contributing. I find great benefits in it as well.

Lisa

Nancy Ackerley

9/ 9/08 6:17am

Hi i was thinking about you.Just wanted to know how your doing.I really wished your family could understand the pain and stress you are going through.Just know that we all care what is going on. like i said before.If you need a ear i am here.I am going to Billings, Montana today for a EMG i am pretty nervuse.I had a Mri a couple of weeks ago. But don't know the results yet.The Doctor is waiting untill i get the emg to tell me everything.So i guess maybe today he will tell me something. Take care.Nancy

Kathy Flores

9/11/08 1:20pm

Hey Theresa,

I know that I am responding a bit after your post but I have recently joined this site and have been trying to catch up by reading a bit here and there. Your post spoke to me because I can relate to the need to talk about it when I am in a relapse especially when the symptoms are new or painful. I find myself talking about it a lot when things appear. Pain is one of those symtoms that knock you on your knees and it helps to talk about it. It really helps to talk to those who have been there. I actually started seeing a therapist because I felt that my need was becoming too big for my partner and I needed to get it out somewhere else. Anyway, I'm glad you are on this site because in the short time I've been here, I have found great comfort and support from others.

How are you feeling today?

Kathy

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