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hanginin
Regular Member


Date Joined Jun 2008
Total Posts : 44
   Posted 10/17/2017 7:20 AM (GMT -7)   
Hello all, hoping you are all doing okay.
Me, not so much. I have Lupus which started to flare back in July and from there the fibro joined in....
Saw my rheumy yesterday, main complaint pain, stiffness, fatigue making it impossible to sleep. That whole catch twenty two thing.
She gave me some muscle relaxants and thankfully it worked quite well.
I was also told to stay put.....which is hard because I have always been a believer in determination and the dams the torpedos approach.
So her I sit.
But I did accomplish one thing. The drug I was given works by relaxing muscles but also on the Central Nervous System.
That whole thing has always scared me. When I flare my brain is always
affected, that brain fog thing. I have always known of it but never really studied it before today....fear of losing my mind I guess.
So now my question to all of you good folks is, Is there anything one can do physically to help the cognitive symptoms? Besides meds I mean. How can one stop the CNS involvement from happening or can we? Is there anything that will lessen this kind of symptom.
I made a list of all the things I think are part of CNS involvement that I deal with....there’s a lot. From what I learned it’s because everything
body is orchestrated by the brain and spine.
Here are some of my issues which are from an annoyance to rendering my life to a stand still.
Pain- fibro,headache,jaw clinching, neck pain and muscle stiffness
Memory problems
Concentration and focus
Sinus issues
GI function, mobility problems both bowel and bladder
Sleep problems
Stamina,fatigue
Balance, special issues, vertigo and dizziness
Mood, anxiety, fear, panic, frustration
Speech, forget words, articulation problems
Appetite loss, nausea
Muscle weakness and strength
I think they are all brain and spine issues from what I read.
The brain is quite fascinating with all it’s parts and what they do and the spine how it sends signals from the body to the brain, very interesting.
I just have to wonder if there is anything that can help the CNS from happening or at least to minimize the symptoms.
Would love to hear from you. Thanks, tuffymason

Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2086
   Posted 10/17/2017 1:05 PM (GMT -7)   
Hi, welcome,

Sorry your having to deal with both of these diseases at once.

I have fibro and other pain issues..old injuries.

I do get the fibro fog off and on..others seems to have it more steadily..we are all so different with both it ,and and other fibro symptoms...

So its very trial and error for each of us..did you look at fibro 101 at the top of our page...its lists most the possible symptoms

I went into a flare last night with a cold weather front..made my back very stiff and sore.

I am more cognitively challenged with bad barometric changes, when i notice, that when the pressure changes, my breathing gets more shallow, which amplifies the cognitive and pain issues..

There are two things that calm that situation, laying on an acupressure mat, helps..also i use a microcurrent unit, which can calm my breathing within a minute, which helps me calm and focus.
Not sure they would work for everyone , as they do with me, but thought i would share that info.

Lj

hanginin
Regular Member


Date Joined Jun 2008
Total Posts : 44
   Posted 10/17/2017 4:54 PM (GMT -7)   
Thanks so much for your reply. You know I have struggled with Lupus for years but the past few I just felt something had drastically changed.
I had never hurt so bad, never felt so lost in my own head and so alone.
I would go my GP and say I feel just awful, something’s wrong...but you know I did not know until today that fibro was not just pain.
I feel like it explains so much. It is all encompassing, and no I am not nuts that I do hurt everywhere and my bladder leaks and my gi tact quits working and I can’t remember how to cook dinners I have cooked for years and and and....
I did get to read the fibro 101, it explains everything so neatly.
The Baclofen really helped last night too, my rheumy had given it to me yesterday at a kind of emergency appointment. It is a muscle relaxant mostly used for MS spacicity but it also works on the CNS involvement.
I finally slept and without opiates or coding which I hated having to resort to.
I will continue to study the CNS and why I feel the way I do.
It is so much easier when you understand to deal and move forward.
Thanks again, tuffymason

Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2086
   Posted 10/17/2017 7:16 PM (GMT -7)   
Its great you can use the muscle relaxers,

I know they would help me, but have not found one that i tolerate well..

I am also med sensitive, i do rely on topical pain relievers and need to find a masseuse that understands fibro..but i was having some physical therapy after a fall..

So many of us with fibro get help with the muscle relaxers..

hanginin
Regular Member


Date Joined Jun 2008
Total Posts : 44
   Posted 10/18/2017 4:39 AM (GMT -7)   
Meds and I do not do well at all. It drives my rheumy nuts, me as well. We tried cyclobenzaprine but even though it helped painwise I forgot my own name and everybody else’s!
I did read about the side effects of Baclofen and am concerned but I have been in such a bad place for so long I had to give it a shot. So far just the vertigo, dizziness. So no driving for me for now
I hope to use them temporarily to settle things a bit and then hopefully I can stop. Not for a few days though as I still hurt pretty bad and can use the sleep time. I struggle terrible with a weird insomnia where I fall asleep only to waken shortly after in kind of a anxious where am I feeling then can’t get back to sleep. Then the insomnia/frustration or something just ramps up the pain symptoms so bad by morning I have needed pretty heavy pain meds, Tylenol 3, which I don’t like to use.
When you speak of micro current is it the same as a tendze (sp?) machine? I thought of using mine but it thought prickles for pain might not be the best idea.
What a wild ride. Unbelievable really. There is no describing it to most people, one just cannot describe it with any true understanding.
So today I am thankful and happy to finally understand it and life is good again and I work towards something instead of flounder in pain and confusion. I have hope again.
Now to find something quiet to keep myself occupied and I interested for another day.
Just a note sorry for the spelling, I just simply forget how to spell and sit here knowing that something does not look right but for the life of me cannot remember what 🤔.
Thanks again, tuffymason

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17556
   Posted 10/18/2017 4:42 AM (GMT -7)   
I know how awful the cognitive memory problems can be. When they first hit me I thought I was coming down with Alzheimer's. I had conversations, supposedly, that I don't remember having. I would get so upset and shed many tears over this. I used to be a teacher and had a good mind...could remember everything.

But I found by stressing over this, I just made myself worse! The anxiety kicked in and that caused even more symptoms. It's amazing what anxiety can do to the body. Some of the symptoms you listed can be caused by anxiety. Anyway, I started accepting the memory issues as a new part of my life and would laugh if I forgot something. Two days ago I had to call my supplemental health insurance. They asked for my phone number and there was no way on earth I could remember it! I started chuckling and said I had forgotten it. The woman started laughing too and found it in their computer system. I told her I had cognitive memory issues due to Fibromyalgia and she understood. Of course, as soon as I got off the phone, I remembered my phone number.

I don't have things like this happen really often. I do take folic acid and that does help me. They are starting to give folic acid to Alzheimer's patients to help with their memory. Here is a link about folic acid.

/www.news-medical.net/news/2005/06/22/11263.aspx

For pain I use ibuprofen with food, tylenol, magnesium malate, vitamin D3, and a muscle relaxer called Robaxin that has made a significant difference between in my pain. Lj, you might try this muscle relaxer. The usual dose is two tablets four times a day. I take one tablet twice a day. AND these are scored, so you could cut one in half and try it that way!

I also walk daily as a gentle form of exercise and I pace myself when doing things. All of this has helped with pain. If you sit or lay too much you will be stiff as a board and have more pain. I'm surprised your rheumy told you to sit! I'm in a world of pain if I sit too much. I take care of my home, cooking, I do a lot of gardening which I really enjoy, take my daily walks, love to grocery shop, etc!

I do keep a positive attitude and that helps me nearly as much as the medications and supplements. I look forward to each new day with anticipation because it could be a good day. I love the link in Fibro 101 on how to maintain a positive attitude when you have chronic pain. It really is s excellent!

I hope some of this helps you. Have lived a full and enjoyable life in spite of fibro. I do not let fibro stop me from doing what I want. I might have to make a few adjustments, but I still do what it want. This Saturday my daughter and I are heading to our county fair. I live in Florida so the fairs are starting up since the weather is cooling. Sure, I'll be tired and have more pain by the time of leave but I will have some neat memories to add to my bag. Plus, I'll get some French waffles. 😁

Please do me a favor and put spaces between your paragraphs. It makes it easier to read and members will be more likely to read the post. It's frustrating to lose your spot and then have to hunt for where you left off. Thanks! Hope you have a good day today.

Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2086
   Posted 10/18/2017 9:10 AM (GMT -7)   
The tens unit was too strong for me and added to the pain, but the micro-current unit is basically the same but more gentle..

An alternative dr. Had recommended it for fibro patients.

Sherrine, our own phone number is the hardest to remember, because we do not call ourselves..now that our phone remembers the numbers this will only get worse, i think

As i said in earlier post, i can be perfectly clear one day, and foggy the next..some of mine is meds i think..i use a sleep aid that adds to fog

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15525
   Posted 10/18/2017 12:15 PM (GMT -7)   
Hanginin, I happened across your post & saw that you have been prescribed Baclofen as a muscle relaxant. I have been on Baclofen many years now & it has been my saving grace. Over a 30 years span I have tried probably every muscle relaxer there is & have found Baclofen has worked the very best for me. I was fortunate enough to not have any side effects. As we all know any medication has the potential for possible side effects. If you are having any, I urge you to give this medication a few weeks so your body can become adjusted, unless you find them too severe. Also, it is important that you take this on a schedule daily in to keep the serum level steady.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

hanginin
Regular Member


Date Joined Jun 2008
Total Posts : 44
   Posted 10/18/2017 7:09 PM (GMT -7)   
Thanks so much everyone. Sherrie, when I said my rheumy sad to sit it’s because I can be my own worst enemy, there is a fine line between determination and acceptance. I did not mention that I moved this summer, well downsized really to a new home. So a lot of work, too much work. But sometimes you have to pick your battles so Iknow I worked way to hard for way to long. I couldn’t talk anybody into doing it for me!😉
In fact the last four years of my life has been that way, all about love and loss almost to unbelievable to fathom. Love and loss. So, last years ITP and the high dose prednisone and chemo, and now this, it is pay back for it all. But I would not even now change a thing, you pick your battles. A little deep couch sitting honestly feels pretty good too.
I think my rheumy knows that even if I do listen to her and sit awhile I won’t sit for long.
I will look into the micro unit, thanks.
Great to hear about the Baclofen, it has worked wonders just the few nights I have had it. I also am on Meloxicam an anti inflammatory. I have to use low dose pred all the time for Addison’s disease and the lupus but oddly enough it does not touch this.
It just amazes me that I had the idea fibro was “just” some muscle pain. Even my nurse practioner got a lesson in fibro today, I made it perfectly clear that this what I and all you good folks have been suffering with and deal with everyday is not just pressure points.
She listened with intent about what I have learned only since yesterday about it’s attack on the central nervous system. She said she will study it. That makes me happy as next time someone with fibro comes in to see her she will listen much differently.
I am not afraid anymore, and the brain fog is nothing I haven’t handled before and my brain always finds it’s way home.
Thanks again tuffymason

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17556
   Posted 10/19/2017 9:02 AM (GMT -7)   
Im very much like you. I'm a perfectionist and push myself and then I pay a price. But I have gotten much better at pacing myself now. I take short breaks when doing my work. It works for me!

Prednisone doesn't usually help with fibro because fibro isn't considered an inflammatory illness. But it would help with lupus and any other inflammatory thing you have going on. Be sure to take calcium, vitamin D3, magnesium, and vitamin K2 to help keep your bones strong. Prednisone is terrible for your bones. So are the PPI's that many take. I didn't develop osteoporosis until I was put on Prilosec for several years. Yikes!

Again, please put double spaces between your paragraphs. It's difficult to read otherwise and I do lose my place sometimes. Thanks!

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

hanginin
Regular Member


Date Joined Jun 2008
Total Posts : 44
   Posted 10/20/2017 3:40 AM (GMT -7)   
Thanks, sorry about the spaces.
My memory has been so bad lately.
Tuffymason
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