[syrakim13088]

I was home today from work with my neurological spasms. They would bother me on and off all day..the latest one I just had about 1/2 hour ago sent me over the edge. It got me crying because it was so painful. But now that the spasm have subsided, I still can't stop crying. I guess I've moved onto self pity. I just hate feeling like this. The meds don't seem to help. I take baclofen and neurotin already. I have a script for Valium for when it gets really bad, but I don't like how it makes me feel. I'm trying to continue to keep working, but it seems like that is getting to be too difficult. I just don't know what to do anymore and I've joined this forum to try to find people like me who can understand what I'm going through and offer me some advise. Thank you to anyone who can give me some support.

[Darlene]

syrakim,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Click on the following forum there you will find assistance from others.

Spinal Disorders & Back Pain
http://neurotalk.psychcentral.com/forum22.html

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[Myelogirl]

Hi syrakim.

I've just joined too so it's the blind leading the blind but I thought I'd come in and let you know I'm thinking of you.

I suffer from spasms too but I'm retired and don't have to work so at least I don't have that worry.

I take Valium when my spasms get bad but I try to avoid it because I don't want to develop a tolerance or dependence. I quite like the feeling I get from Valium so that's a bit of a worry in itself .

I tried Baclofen but after three weeks of throwing up every day without even increasing the dose, I gave it up as a bad joke. I asked my Neuro about a Baclofen pump but I just got a very negative response. if you catch my other post in the spinal disorders forum (not sure where to start....is the title) you'll understand how I feel about my lack of care.

I have no advise for you. Just want to let you know that there is someone else who understands.

[syrakim13088]

Thanks for your reply Myleogirl..I also have lack of care, now I'm falling into deep depression because of my medical instability and lack of care.. I don't have anyone I can hang with or spend time with to make me feel better. I have a script for Valium also, but I don't like how it makes me feel days after I take it. So I'll do anything I can so I don't take it. I have a 30 day follow up on Wednesday with my Neurologist but I'll probably be seeing the nurse and they are useless (moreso than the doc)...Well I'll try to keep in touch with you, as it sounds like with share similiar medical issues. Thank you for your kind words.

[Myelogirl]

Hi syrakim. I very recently admitted to my Physician that I was depressed and asked for a referral to a Psychiatrist. I think my Physician got a bit of a shock and asked why I wanted a Psych. I told him that if I spoke to him about it, I wouldn't need a Psych. He just laughed and referred me. I was in hospital at the time for my monthly IV meds and got to see the Psych the next morning.

It was the best thing I've done for myself in a long time. I never thought I'd see the day when I (me, myself, mois) would ever ask for Psych help. It was so wonderful to talk to someone with absolutely no vested interest in my medical condition, family, relationships etc. there was no judgement, just support and understanding. In short, I immediately felt a bond with this man. I think I would have been intimidated by a smartly dressed, slim young female but when an older, scruffy, overweight, absentminded type of bloke turned up, it put me straight at ease. The nurses on the ward said they love him to bits.

Seeing a Psych is doing a couple of things for me....it's working through my anger (didn't realise I was until he pointed it out), my depression, despair, hopelessness and all that nutty mental stuff. Then there is the practical side. As I have asked for psych help it proves that I want to improve and it's going to spur my medical doctors on to try to make me physically better.

If there is one thing I have learned since I became unwell, it's that you are the only person who can help yourself. Don't allow your concerns to be ignored, your pain to go untreated, your distress to be minimised.(just learning this now). You are your own Advocate. In the end there is only you who can insist on being treated properly.

I wish you every success on your journey because that is the other thing I've learnt. Chronic illness is a journey and it has a few bumpy roads.

[MelodyL]

Originally Posted by syrakim13088

Thanks for your reply Myleogirl..I also have lack of care, now I'm falling into deep depression because of my medical instability and lack of care.. I don't have anyone I can hang with or spend time with to make me feel better. I have a script for Valium also, but I don't like how it makes me feel days after I take it. So I'll do anything I can so I don't take it. I have a 30 day follow up on Wednesday with my Neurologist but I'll probably be seeing the nurse and they are useless (moreso than the doc)...Well I'll try to keep in touch with you, as it sounds like with share similiar medical issues. Thank you for your kind words.

Hi there.

I'm reading the posts on this thread. Feel for the both of you. Do me a favor (this has nothing to do with taking any drugs by the way). If you have some epsom salts in the house, tonight before you go to bed, take a cup of epsom walts, put in a basin of hot water (not enough to burn of course) and soak your feet for 20 minutes. Dry off and go to bed. Repeat this every night. Epsom salts is magnesium sulfate and magnesium helps spasms. It did for me. At the worst, you'll have soft feet when you retire. At the best, you just might see your spasms subside a bit. Can't hurt to try.

And (and don't think I'm nuts) but you can google what I'm going to tell you. People with severe muscle spasms are prompted to take a bar of soap (I use Ivory) and take the wrapper off and place an unused bar of soap between the mattress and the sheet. No one ever figured out why this works but it does. I attended a monthly Neuropathy support group meeting and many of us had muscle spasms, cramping the lower legs, in the toes, etc. And when I mentioned the soap EVERYONE knew about it and said "Oh yeah, I've heard of that". And we now all do this. So two things I'm suggesting here. Put a bar of soap between the mattress and the sheet, and soak your feet in a really nice and warm epsom salt basin and let's see what happens.

Can't hurt and just might help.

Sincerely,

Melody

[cnrcwe]

I experience neurological spasms and pain daily. I have exhausted all the approved treaments known for both my Cervical Dystonia and RSD. I have joined the forum to seek tools to keep fighting and find someone who understands what I am going through. I find that the hardest everyone thinks I am just complaining to get attention included Drs. Friends and family try to understand but they just don't. Anyone have words of wisdom or recommendation to get through the day.

[razzle51]

spasms where ????? have you both been diax with anything . don't suffer see the dr...

[Rrae]

Originally Posted by cnrcwe

I experience neurological spasms and pain daily. I have exhausted all the approved treaments known for both my Cervical Dystonia and RSD. I have joined the forum to seek tools to keep fighting and find someone who understands what I am going through. I find that the hardest everyone thinks I am just complaining to get attention included Drs. Friends and family try to understand but they just don't. Anyone have words of wisdom or recommendation to get through the day.

Welcome to NT!

You sure have come to the right place for support and understanding.
Pain is the common thread which binds us. I too felt the way you do regarding friends/family not understanding. This forum was my saving grace.
PLEASE visit the RSD forum! so many wonderful people there, plus alot of good information on this monster condition.
Your pain is absolutely real.

Make yourself at home here. The atmosphere is very down-to-earth and nobody will ever judge you. Lots of good forums here, so post anywhere you feel inclined. There's a friend around every corner.

Just holler if you have any questions or need help in finding your way around. We all look out for each other
It's great to have you!

Caring,
Rae

[Rrae]

Originally Posted by syrakim13088

I was home today from work with my neurological spasms. They would bother me on and off all day..the latest one I just had about 1/2 hour ago sent me over the edge. It got me crying because it was so painful. But now that the spasm have subsided, I still can't stop crying. I guess I've moved onto self pity. I just hate feeling like this. The meds don't seem to help. I take baclofen and neurotin already. I have a script for Valium for when it gets really bad, but I don't like how it makes me feel. I'm trying to continue to keep working, but it seems like that is getting to be too difficult. I just don't know what to do anymore and I've joined this forum to try to find people like me who can understand what I'm going through and offer me some advise. Thank you to anyone who can give me some support.

How I feel for you
I too battle these horrid spasms. Your tears are not self pity! When the pain gets so bad, there is no other emotion to react with. Add to this the frustration of the meds not helping much.
I agree with you regarding the valium. I've been prescribed Klonopin, which is in the same family as valium - it's milder and more subdued. I find that it does help in getting the mind and the muscles more relaxed. When my spasms flare up I go to my room and lay on a heating pad and play solitaire on my computer. It helps to take my mind off the spasms and take the edge off..

I'm going to check into getting some physical therapy. I went to a chiropractor and he recommended this in the hopes of strengthening the muscles to help increase my tolerance and also to help decrease the spasms.

Myelogirl said it so well. You'll be amazed at how much people, even total strangers can truly care once you reach out for support.
My pain Dr referred me to a psychiatrist and I am SO glad for that. A mental health professional can do wonders for a hurting body because it affects our mental health as well. They have 'calming' techniques to try also.

It's great to have you here!

.......ok, now I'm off to go get a bar of soap to try what MelodyL suggests!
Rae