The first and most lingering symptom I had was my hands.....Early on if I took the easiest case in the ICU and did one B/P the residual effect was awful. I kept asking if I could have Lymes in my finger joints....
Specifically the LEFT MIDDLE FINGER JOINT. The pain was so bad that I dreamt my house was on fire and I was opening the window(burning) to jump out the window.
When I woke...the hands were stiff and burning unable to move without a good 10 pain.
The answer for me came many years later and I still have as I examine my arms a neuritis that happens from entrapment in the shoulder/anterior and posterior arm pit area. It is injected (TrP) by neurology and it releases and the hands are better.
I remember asking the Neurologist I was seeing t the time, how long before I have wasting of the muscles.....he couldn't figure it out until I saw Dr D and she had Travelle and Simmons on the desk. When she answered all my questions, I cried. No muscle wasting....no damage but I have a fix.
It is amazing what can happen to our bodies and what the medical teams around us do to figure out the real issues of what is happening. Sometime I just shook my head at the answer I received. (I feel for the non medical pt) If I did the surgeries and half the dumb responses I would not be where I am today.
I did get braces made for my arms that were full length to keep the elbow from bending (Frankenstein!) I was so afraid I would smack my husband during the night.....stupid....
If this is MPS the key for me was repeated TrP injections in that area. P R I C E L E S S....
Good luck. It is amazing the effort put into getting some relief. Alot of the time it is the patient that gets the answer and fixes themselves.
Good morning, There are non medical additives to the pills I take, but my meds are the base to the things I do. Have you looked in the resource area to the right to see the Members Toolbox ? In there are the many things we all came up with that worked for each of us.
I hear you with the sitting in church, Mass is a tough one, a problem for me also. Make sure you have the supplements in. If money is an issue this is all going to be tough to treat.
Things that are free I use as an addition to.....meds. Mimi here doesn't use anything but Supplements, but that wouldn't have wrked for me. I hope you get some good answers to help you. But try the toolbox...there is so much in there.
HAPPY BIRTHDAY TO YOU...HAPPY BIRTHDAY TO YOU...HAPPY BIRTHDAY DEAR CECE, HAPPY BIRTHDAY TO YOUUUUUUU. (picture a howling dog showing his affection with the uuuuuuu) No I don't know what day this week is your birthday but I know it is coming. This way the fmily has plenty of time to wish you well and gently hug you. Hope the week goes well and Mom and Dad stay safe and on target with their meds and issues. Hugs from me, Nancy BView Thread
If the sink is ME....no I have a regular pipe set up. I did run the water and feel everything and no water so I told my DH last night.....
Maybe when Theresa comes to clean the house she still has some water in the (patient basin) bucket she uses and it is tipped on its side....every two weeks she comes in and adds a few more drops and it all walked over to this box and it was amazing to see.
The curdleling borax grabbed hold of things and walked under and through the pull out system I put in there. Cripes, it was something.
That's the only thing I could think of for now. It did a number on me being under the sink. OUCH. That and the snow...my lower back is upset. . But I will walk it off today I hope.
Be careful Bette to lay in bed. Even if you are in a recliner but up....none of what we have gets better with laying. How about a massage like I do in the end, when I have walked through the toolbox and no relief. Fridays was uncomfortable but she did make a big difference in the end. Got somebody to help with that ? Good luck and thatnks on the pipe idea.
Good morning Laura, Welcome to the Fmily. Though not joyful for more to need to be here. I am so glad you have been using the site and all the information it offers.
We are bigger than the sum of the posts here. Make use of Dr Pellegrino's posts in the webstite. Use the search section. They are all keepers. His humor was priceless also.
I hope you lean in for help when you need it and use the reply button to help another. Some people (though I don't know why) don't post to share with someone who needs help. We all have different ways to help ourselves and this is what is so great here.
Thanks for letting us know you went from lurker to a poster!! Welcome and I look forward to chatting over things.
The SUN is shining here today and it is to be 50's. I have been out twice to get the SNOW and ICE off the little deck next to the house. Crap it is a chop..scoop action in two parts due to it being higher than a foot!
My wind chimes are tinkeling under the extension and it sounds so nice. FRESH air, nice nature sounds of birds and chimes....good stuff.
I am emotionally beat from work this week it seems to get harder and harder....to try to be pleasant, understanding and still get the staff to do the right thing. Most of the issues is not the work it is the documentation. I am at a loss.
I really pulls me down .
I got my shots on Wednesday this week and it was a large session, so large I think it was too much. I needed a massage by friday. My neck was a mess. You know the feeling when you blow up a balloon and it won't blow, you get that twinge pain by the ears......well that is the pain I was geting off the neck muscles. OUCH.
Tried heat and meds but no good, so to the massage girl. 40 minutes and last night was pretty good.......God bless the toolbox!**
Well, this weekend is filled with things I need to do for spring. I am starting i thought in my bedroom (under the bed) but I ended up under the sink.....not sure what started it and it is FUNNY....I had Arm and Hammer washing soda under there...it is used for cleaning jewelry on those metal plates..... well the box got wet and " IT SWELLED UP and popped the box and looked like cancer growing on things!
Geez...you have to your eyes everywhere! So on the knees under the sink this a.m. I say that is it, plus the deck. DONE. I checked for leaking from pipes...nope....so I don't know what started it....funny to look at though. alive .
Well, Belated Happy Birthday to Cory...I noticed that post. Hoping you are being good and not too adventurous. Mimi enjoy those grands, I haven't seen mine in a bit now. Maybe 3 weeks...I see them on facebook or facetime, but not in lively fashion. Maybe tomorrow.
OK..hugs to all, a good day to get out in the sun. Well, here in NY. Nancy BView Thread
Mary, I believe you can get used to anything. Struggling though is not something I want to handle everyday. I had to find something to lower this down a notch or two.
When I went to a different MD in their team she asked me to hold on to the stretcher before injecting me. I asked "why" she said "well people jump".....well not me. A good hit means I am off and running.
Accupuncture may do it for you. I was already in the beginning of this therapy and the accupuncturist said it was more what i needed. Maybe you don't need to do the whole session at once. Do a little at a time. If I don't do all the connected muscles (and it seems they are all connected) they start pulling against eachother and I am not right. So I try for a full session each time.
Still wonder with my knowledge and all, how this really works for me? I have read so much and still wonder the physiology down at the muscle fiber level. It kills me to be stuck in this.
Good luck. Hoping that your doctor is myofascial trained. Ours learned it from the MD who came from Boston who was my first MD. Glad she came.
Mention to the neurologist Dr Travelle and Simmons work with MPS. They will know exactly what you are looking for.
Geez Cory I was having muscle tension just at the thought of you driving BLINDFOLDED in a race, co-pilot or not. Cripes....do you think you crossed a body-fragile line. You cookoo !! The rest sounded like good times til you got to the race thing.
Me standing in the cold talking is a cause for trouble too........
Hmmm, hope you are better today. I pictured "Rebel without a cause here" LOL.
Mimi, I too hope for the big melt though it is a mess while melting. I have long icicles hanging from the gutters and drips are freezing up on the driveway....yesterday so much salt after I pushed the 2 inches more we got......thenthe truck came and moved it more. I am so done.....Hoping to go out today in the SUN and have a coversation with it. iPod in my ears to hear good music and just sit and melt in the sun....
I feel bad not being here regularly, I don't know what is happening with most. Used to be that we were connected daily. Posts seem quiet and less crisis going on and that is a good thing. Probably a newbie, non posting and suffering out there......hope they join in and ask for help.
It is so hard to go this alone. But reading the "crazy things" we do (no names mentioned) and how we get into trouble and fix ourselves probably teaches them from a distance. Lol.
OK, I am talking Monday on Sunday. Happy Birthday to our Forfathers........Mr Washington and Lincoln. The country continues, though so different now, hope you would be proud.
Oh My all of this sounds like me.....of my many symptoms I had , it was the neck that was the big issue. If I lay down the muscles would just get an underlying of spasm....choke me, swallowing was a problem too. I would medicate and carefully lay down, I had a pillow that I adjusted its height to help. IT WAS TRIGGERPOINTS IN THE NECK MUSCLES.
Yes I get injections in MOST of mine. The session used to be longer but it is 30 minutes now and I get from 30-60 injections. I don't inject my legs or lower body I use massage for them. If it is resistant to heat and massage I will ask her to inject it.
Using TrP injections as a therapy is uncomfortable but it is faster than using TrP massage for the fix. I am sore the next day and in a better/ best place the next. I have used this therapy for >10 years and I go every 2 weeks. I work full time and am in the best place yet this year.
I am grateful to have a neurologist that allows me the appointment every two weeks, nothing has changed to my body with these as they are a fine needle (24G) long though to reach the muscle correct in different areas of the body.
There was a conference presented in Canada and they had me as part of the conference because my improvement was useful and no side effects. I did receive BOTOX twice for the theory that it destroys the endplate of the muscle which is what tells it to contract, and the new regrowth was to be healthier. Didn't work for me. .
The book "FM and Chronic Myofascial Pain" by Dr Devin Starlanyl gives a great explanation to using this as a help for TrP's. She also states the people with FM often have TrP's but people with CMP and TrP's don't necessarily have FM (that's me) I walk the road of symptoms everyone has here except fog......and CFS. I use and have learned tools here to help myself.
This has been the most difficult thing I have ever had to deal with. Hope it is all I have to deal with in the future. I share it all with you, because I was so alone when this all started and before I found this site.
The thing with trigger points is they return. Some do go away, I don't have as many now but I need to go every 2 weeks or my harder symptoms return.
I am 4 weeks post injections now and I am in numb hands, headache and feeling 90 territory. After meds and a shower I can get younger and more mobile but I can feel the tension in the muscles and the motion ability is changed. I still stretch, but you cannot stretch out a muscle with a trigger point in it (as the book says) and this is what I treid to tell all those PT people.
I was always worse after their sessions.
The other important thing with this terapy is that the practioner is skilled at injecting. For me if the hit is not in the congested zone and it hurts...there is not going to be a release for me. I have had this, where she missed and I carried the issue for 2 more weeks. This is how I started having my husband find them and mark them.
TrP's are often symmetrical (well they say that and it is true for me) DH does one side and then looks to the other.....on palpation wa-la there is the cousin sitting there. Some are active and I know they are there and some are latent (quiet til touched). Darnest medical problem this.....
I was told never to stop this therapy (as I wanted a few times due to the discomfort it was)(early on) She said I will seize up and just be a mess. So I continue to what I was told.
I hope this helped with any more questions. This is what i do to fight this mess we are in. Soma, tramadol and savella are with me as well. Mg, Vit B complex, calcium and CoQ10 join in too.