Any relief for constant muscle tension? help please

General
1

I am still in limbo with doctors but if anyone has any suggestions at all for relief of muscle tension it would be greatly appreciated! It is an every day thing, and was before surgery too so I can't blame it all on the surgery,. My primary doctor has been doing the majority of my care until I find the right neurologist which I see yet another new one on Friday.

My PCP is amazed how tense my shoulders, neck, and back are when I visit her and they are like this all day every day. Baseball size knots everywhere and some days I just can't handle it. I have tried multiple muscle relexers and they don't help either. I always know before I am going to get a major migraine because the tension is 10 times worse the day before. On Wednesday of last week I made my first trip to the ER in a LONG time. My meds were not touching my migraine, went to the ER spent 4 hours to get morphine, benadrly, reglan, and toradol through an IV, they did a CT Scan which was fine of course and none had any idea what Chiari was and I had to spell it for them all several times. But I knew that was going to happen, I just needed the pain relieved, I wasn't there to be "treated" for the chiari as I knew that wouldn't happen.

So with the new neurologist I am trying sooo hard not to get my hopes up since it never goes well.. well hasn't with all the others. But I am also doing a consult for botox while there, and my PCP mentioned they might not do botox since I have had the surgery. What about trigger point injections? Anyone have luck with those? I need something.. i am losing hope and getting depressed as you all know that feelings. My surgery was not successful at all in terms of helping with the constant pain or migraines. I am out of FMLA from surgery and additional time off for migraines, I am almost out of PTO, I hate missing work, I am horrible at pushing myself to the last possible minute to leave work before I can't drive. And last week I waited too long and had to get a ride home from work from my in laws mid afternoon. I hate not being able to clean my own house any more and feel guilty for my husband now doing it all, I never thought I would see the day that I start looking for a cleaning company because I am very OCD and the house must be clean lol But I learned that me doing bathrooms is out of the question unless i want to be in bed the entire next day.

Ok so my post got a little off topic, sorry. I am just looking for any kind of advice or suggestions for this new neuro. I am willing to try about anything right now. And I plan to ask about EDS as I have a lot of things on that checklist.

2

Hi...

I am so sorry that you are in this boat! I give you so much credit for working! It has to be awful, when you are in such pain.

As for the muscle tension...I know what you mean about the muscle relaxers not really helping...A few mths back..my PCP wrote for Skelatin...the side effects are not sedating and it is non addictive...which is what I was looking for..but...it did nothing..

What does help..(and, funny how things work out..I just bought more...as it was on sale Saturday!)...It is called ZIMM'S MAX FREEZE..it is a roll on ...You can get it at any drug store or Wal Mart.

Keep us posted on how you are doing!

Lori

3

I found I have to be very conscious of my position at all times. I have a tendency to kind of hunch my shoulders up and look down which causes me to get really tense in the neck. Now several times per day I make an effort to relax my shoulders and stretch to release the tension and it's really helped a lot. It also helps when my husband gives me a neck and shoulder massage. The times it gets really bad I take valium as I find it works better than the muscle relaxers I have.

4

I'm not a doctor, but have you ever tried a TENS unit? My pain management doc prescribed one for me before my first surgery and my insurance picks up the supplies that are sent each month. Having the doc teach me how to use it was a big help.

I won't say that it totally gets rids of the tension, but while it is on I feel a big improvement.

5

Thanks for the replies. I have tried the arnica gel and some of the gel freeze types of things but they don't seem to touch the pain at all. My doctor hasn't mentioned a TENS unit although I have heard about them and looked them up. But she is my PCP since I cannot find a neurologist and had a not so great experience with the NS that did my surgery, so right now she is all I have until I see the new one Friday. I will ask about that and see what they say/suggest.

I know my posture isn't the best, i am in IT so i am in front of 3 monitors all day for at least 9 hours a day. I do get up and walk around every so often but on busy days I may only get up to use the bathroom 3 times all day lol i love my job, company, and people so I don't plan on going anywhere. I can work from home *some* but not much, my job is pretty hands on at times. I couldn't give up the benefits/insurance here though. $25 a paycheck and everything done at St. Vincents is covered 100%, so in other words I paid nothing out of pocket for my 4 MRI's this year, and more. My surgery however was done out of state so I didn't get those great benefits for that but.. I didn't have to pay much compared to most insurance's. So I try my hardest not to complain because I know I am very lucky to have the job and support I have here.

Which is why I am soo hoping this appointment goes good and can find something to help my days better.

6

Dry needling helped my muscle tension tremendously!

7

Thanks! I have never heard of "dry needling" before. Sounds interesting.. is it similar to acupuncture?

8

My pain specialist injected my right shoulder on Friday. Sorry I don’t remember what it was but it has helped a lot. Not a miracle of coarse but I’m now able to shrug my shoulders with our feeling any pain and muscles finally feel so what relaxed after being hard as a rock for months

9

I am so sorry you are having these problems. By any chance have you seen a pain mgmt. specialist? I would ask your PCPfor a referral. I have had nerve blocks and ablation and they have helped immensely. I still have major neck pain daily from a rebuilt C Spine & additional surgeries. Have you tried Klonopin? I take 1mg 3 times a day & it's the only thing that helps my neck consistently & I have tried everything. It was developed as a muscle relaxer. Not a nerve pill....it was later found to calm peoples nerves , just as Valium was. I do not recommend Baclofen. Others may. It's did nothing for me but make me tired. I also take Topomax 100 mg 3 times a day because I came off narcotics & 75 mgs of amitriptylene & Fioricet for headaches and other meds when things get bad.I keep emergency meds to keep from going to the ER unless absolutely necessary. Has your Dr's ever said anything about occipital neuralgia may be causing your headaches?

I also understand your frustration. My house used to be spotless then over time I had to realize I could only do my best. I too had to get someone to come in to do my "heavy cleaning."

Please see a pain specialist.I promise it will make the world of difference and they actually help Chiarians. Most Chiarians don't have much luck with NL. Please don't be disappointed. I had one in the hospital that looked at me and said "I am an epileptic expert I know nothing about CM.I asked why she came to see me then. My PCP is great & a friend but he only knows & can do so much. You are a great wife and mother and person. Please don't be hard on yourself because you can't do the things you used to do. You have been through so much already. I wish I could give you a hug.....I have totally been there.

Let us know how you are doing and know you aren't alone,

Tracy

and Arnica?

10

Hi Tracy,

I have not seen a pain management doctor.. I guess I was secretly hoping I wouldn't need to. And honestly with all the Indiana "war against drugs" it almost makes me nervous to even go to one! Its been flooded on the news around here. I know, no excuse, and I do not have a drug problem lol I have actually been weaning myself off lortab, I have been on them for 4 years now and since surgery in March I take around 1 1/2 to 2 a day.. which is a lot better. But I haven't made the next step down yet and I want to.

I have taken Kolonopin but it was only as a "break" from xanax. I have been on xanax for 4 years as well, but I have true anxiety and have well before knowing about chiari. However it makes me tired so I only take 1mg at night which is what i have been on for 2 years, without increasing. If it stops working I switch to kolonopin for a few months then back to xanax. The xanax helps more with my anxiety but not during the day since i don't take anything for it during the day.

I also have baclofen.. it does nothing for me... nothing at all. So I don't take it. Tried it for a month and stopped. I do take flexoril but i was trying to get off of that too, i used to take a whole one every night, 10mg, now I break them in half every night. However this has been two months and when I even try to skip the half, I can tell a big difference in the morning with being so stiff I can't look to the right or left at all without feeling the stretching and hurting. So I think the xanax and flexoril are here to stay until I find something else. I have tried several other drugs over the last 5 years..

Naproxen

cymbalta

imitrex

imitrex air injections

inderral

topamax

midrin

max alt

fieorcet

prozac

effexor xr

wellbutrin

lexapro

Those the ones I remember lol

My doctor hasn't mentioned the occipital neuralgia although I have read about it on my own and it fits my migraines to a T! My PCP does her best, and I love her and I am grateful she hasn't given up on me. She did all my post op care through all the infections and everything since my NS was worthless after surgery. I need a doctor that specializes in all this whether that is a NL or a pain management doctor, I don't care, I am desperate at this point and would try about anything. I would love some kind of shot instead of popping pills, and of course I have horrible reactions to some pills.. topamax being the worst next to inderral which I am allergic too! lol I try not to get "down" as I am a very positive person but I am also used to taking care of my two boys that have special needs. Between their appointments, IEP meetings, homework, tutoring, and driving 500+ miles a week I am exhausted before I even get out of bed! Sunday it was so bad I could barely stand up to support myself. I just felt so weak. ANd then depressed... the whole "I am 32, I can't be like this" sets in and it is downhill from there.

I do love cleaning, I love being on the go, I love being able to manage all the stuff for my kids, but I hate feeling like I got run over in the process! And to think my oldest is almost 11.. so 11 years ago I managed working full time, seeing his 18 specialist at Riley, and he had 5 surgeries in 12 months, then added my second son to the same mix, who also had 6 surgeries, we were up to 8 therapies a week at our house and yet I still worked a full time job, cooked, cleaned, and all that. I finally quit working in 2005 when my youngest turn 1 and found out he had Chiari and needed brain surgery before his other surgeries... he had 3 surgeries in 32 days , one of those his decompression. His Chiari was so bad he could not bare weight on his legs at 12 months old, syrinx and all. Surgery 2 weeks after the MRI since his others were already scheduled. But my gosh he was a completely different baby after his surgery! No more reflux, no constipation, he walked 3 weeks later, no more constant crying out of no where.. and he is still doing fanastic! I am very grateful for that! I hope he continues to have no issues.

Any way, its depressing because I have been remarried for a year now, and sure having a baby does get on my mind, as my husband is younger, never been married, and no children of his own. He says he does not want a baby.. but I think secretly he would like to one. But he also knows physically that it might not be the best for me. Plus I was told I should not have any more after my second c-section, and all the boys medical issues with genetic disorder in my oldest, to the chiari and pierre robin in my youngest. I love me kids and I would do it all over again, but I don't think I could handle a baby with special needs now.. I don't know if I could keep up. So it all just depressing. My youngest told me last weekend, that "we used to have more fun over here" speaking of my house vs. his dads... well for the last 2 months and my ever other weekend with them, I haven't been able to do much at all, let alone take 2 kids some place fun by myself. My husband works on Saturdays, so we try and do something on Sunday. But we used to always do at least one thing out of the house. They see me cry, they saw my off to the ER last week, and I get a "mommy are you ok" from my oldest who really doesn't understand. I try to "hide" as much of it from him as possible... he is my "worrier" child, and very sensitive.

Any way, sorry for the novel. I will do some checking online and see what I can find for a pain management doctor here. Still looking for a cleaning person.. so far no luck!

Thanks for all the replies and suggestions. Again, I don't have my hopes too high for fridays appointment because I know it will lead to big disappointment lol :)



TracyZ said:

I am so sorry you are having these problems. By any chance have you seen a pain mgmt. specialist? I would ask your PCPfor a referral. I have had nerve blocks and ablation and they have helped immensely. I still have major neck pain daily from a rebuilt C Spine & additional surgeries. Have you tried Klonopin? I take 1mg 3 times a day & it's the only thing that helps my neck consistently & I have tried everything. It was developed as a muscle relaxer. Not a nerve pill....it was later found to calm peoples nerves , just as Valium was. I do not recommend Baclofen. Others may. It's did nothing for me but make me tired. I also take Topomax 100 mg 3 times a day because I came off narcotics & 75 mgs of amitriptylene & Fioricet for headaches and other meds when things get bad.I keep emergency meds to keep from going to the ER unless absolutely necessary. Has your Dr's ever said anything about occipital neuralgia may be causing your headaches?

I also understand your frustration. My house used to be spotless then over time I had to realize I could only do my best. I too had to get someone to come in to do my "heavy cleaning."

Please see a pain specialist.I promise it will make the world of difference and they actually help Chiarians. Most Chiarians don't have much luck with NL. Please don't be disappointed. I had one in the hospital that looked at me and said "I am an epileptic expert I know nothing about CM.I asked why she came to see me then. My PCP is great & a friend but he only knows & can do so much. You are a great wife and mother and person. Please don't be hard on yourself because you can't do the things you used to do. You have been through so much already. I wish I could give you a hug.....I have totally been there.

Let us know how you are doing and know you aren't alone,

Tracy

and Arnica?

11

I saw where Ellie said that dry needling helped. I had that done and it really helped me also. However my last needling was done on Jan. 23rd and now I feel the tension and tightness coming back.
Did this happen to you?