I haven't been here in years but I need to vent.

[Dayna]

I don't feel I fit in anywhere and I suffer in silence. All the time. I tell no one. I feel broken. Not only my heart but my back. I'm tired of not being able to function like a normal human being, whatever that means. It's now just the "thing" to say anymore because I don't know normal and I don't think I ever really have.

I don't know why I'm like this, but expressing these feelings makes me feel weak and scared. I feel like I'm being negative and I feel like it's gonna breed and triple in intensity by me doing so. The pain as well as negativity, that is.

After all these years, I was finally given baclofen for spasticity. My muscles are hard as a rock in my back and legs and ALL the disks in my neck are buldged, as well as half in t-spine with one herniated and buldged in lumber. The pain is unbearable right now.

I've gotten worse over the past few years because I constantly nod off as I sit in my chair and my neck and low back are suffering because of it. I'm not giving up but I'm so tired. I don't know what's worse, physical or mental fatigue. They both suck the life out of me.

This is my second day on Baclofen. Please tell me when these muscles will loosen, if at all. I have little hope but that little hope is what keeps me hanging on. I apologize ahead of time for bringing anybody down by this post. I always want to lift people up but I'm breaking inside.

[KoKo]

I don't feel I fit in anywhere and I suffer in silence. All the time. I tell no one. I feel broken. Not only my heart but my back. I'm tired of not being able to function like a normal human being, whatever that means. It's now just the "thing" to say anymore because I don't know normal and I don't think I ever really have.

I don't know why I'm like this, but expressing these feelings makes me feel weak and scared. I feel like I'm being negative and I feel like it's gonna breed and triple in intensity by me doing so. The pain as well as negativity, that is.

After all these years, I was finally given baclofen for spasticity. My muscles are hard as a rock in my back and legs and ALL the disks in my neck are buldged, as well as half in t-spine with one herniated and buldged in lumber. The pain is unbearable right now.

I've gotten worse over the past few years because I constantly nod off as I sit in my chair and my neck and low back are suffering because of it. I'm not giving up but I'm so tired. I don't know what's worse, physical or mental fatigue. They both suck the life out of me.

This is my second day on Baclofen. Please tell me when these muscles will loosen, if at all. I have little hope but that little hope is what keeps me hanging on. I apologize ahead of time for bringing anybody down by this post. I always want to lift people up but I'm breaking inside.

Hi Dayna

I'm very sorry to learn that you have been suffering, with physical pain as well as emotional pain.

You are not being negative - you are sharing your reality and experience with us.

This is a good place to vent - thank you for trusting us to listen.

I hope the baclofen gives you some measure of relief from the spasticity.

Besides the baclofen for your muscles, is your doctor recommending any treatment for your back?

Please continue to share what's going on, ok?

Take Care

[Jules A]

I'm sorry you are in pain and hope you get some relief soon.

[Dayna]

Hi Dayna

I'm very sorry to learn that you have been suffering, with physical pain as well as emotional pain.

You are not being negative - you are sharing your reality and experience with us.

This is a good place to vent - thank you for trusting us to listen.

I hope the baclofen gives you some measure of relief from the spasticity.

Besides the baclofen for your muscles, is your doctor recommending any treatment for your back?

Please continue to share what's going on, ok?

Take Care

Thanks, Koko. It's comes so hard for me to share. I'm really trying because being alone in agony is no fun. No fun at all.

I have my 2nd appt (the 27th) with a Physiatry doctor at a "Spine Center" where I live, but she's not doing much for me. Basically just throwing muscle relaxers at me, and within days I call up and say, "Its not working. Please call in something that's actually gonna work. Please?!" It's seems to be the norm anymore.

This is who my PCP referred me to. She also referred me to physically therapy, but the PT lady said she wasn't gonna touch me without knowing what's wrong first. I was sent there BEFORE all my MRI's, and PT said they could cause me more harm than good without knowing the cause.

I don't know why my PCP thought it was a good idea, but I often wonder if some of these doctors pay for their license through the mail instead of actually going to school to work for it. I'm sure I'm not alone in feeling that way.

[KoKo]

It's comes so hard for me to share. I'm really trying because being alone in agony is no fun. No fun at all.

Hopefully sharing here will come a little easier for you, and your feelings of being so alone will lessen somewhat.

I have my 2nd appt (the 27th) with a Physiatry doctor at a "Spine Center" where I live, but she's not doing much for me. Basically just throwing muscle relaxers at me, and within days I call up and say, "Its not working. Please call in something that's actually gonna work. Please?!" It's seems to be the norm anymore.

Let's hope your 2nd appointment is more productive!

She also referred me to physically therapy, but the PT lady said she wasn't gonna touch me without knowing what's wrong first. I was sent there BEFORE all my MRI's, and PT said they could cause me more harm than good without knowing the cause.

Good thing the PT lady was on the ball!

Some doctors...

Take Care

[IntoDust]

Has your PCP sent you to pain management?
I have DDD and bulging discs and once I had a lumbar MRI that showed the bulging discs and foraminal stenosis, my PCP prescribed enough pain meds to hold me over until I could get into pain management.
I was unable to do much at the time. But this allowed me to keep moving so my body didn’t lock and freeze up on me and make things worse over time.
If you haven’t been to pain management, I’d encourage you to have your PCP send in a referral ASAP. PM doctors have an arsenal of tools at their disposal and they specialize in complex pain. Some are good, some aren’t, but it’s worth a try.

[Boudreaux]

Are you open to trying MMJ? It's legal in Pennsylvania right?

[SNOOPY]

Dayna, has your spine Dr. mentioned spine surgery? Bulging/herniated discs can come with a boat load of (serious) symptoms and some similar to those of MS. If most of your spasticity is due to herniated/bulging discs you might not get much relief...sorry

This is who my PCP referred me to. She also referred me to physically therapy, but the PT lady said she wasn't gonna touch me without knowing what's wrong first. I was sent there BEFORE all my MRI's, and PT said they could cause me more harm than good without knowing the cause.

Your PT was right.

If your appointment on the 27th isn't productive please see about a referral to a Neurosurgeon who can evaluate you herniated/bulging discs.

Take care

[Temagami]

I found huge relief in a zero gravity chair - the cheapest version is one of those lawn chairs that has a built in curve and lets you tip back. Shiatsu massage can help alleviate a lot of pain. I keep a heating pad on the loveseat in the kitchen and have a pile of pillows for support. Magnesium cream helps relax muscles- check out Wellness Mama´s blog for the Mg body cream recipe- it is amazing. If that is too much work, order magnesium oil off of amazon.

I had L5-S1 surgery for the disk and woke up pain free- prior I was ready to let a little ole lady off the street go at it with a fork- anything to alleviate the pain. Ultrasound at PT helped lessen back pain. Meloxicam (strong NSAID no sleepiness, nausea or wooziness) helps with the disk pain- but drinks lots of water.

Keep pestering PCP b/c that is his/her job to help you seek remedy.

[palmtree]

Has your PCP sent you to pain management?
I have DDD and bulging discs and once I had a lumbar MRI that showed the bulging discs and foraminal stenosis, my PCP prescribed enough pain meds to hold me over until I could get into pain management.
I was unable to do much at the time. But this allowed me to keep moving so my body didn’t lock and freeze up on me and make things worse over time.
If you haven’t been to pain management, I’d encourage you to have your PCP send in a referral ASAP. PM doctors have an arsenal of tools at their disposal and they specialize in complex pain. Some are good, some aren’t, but it’s worth a try.

In my humble opinion this is the only answer that makes any sense. You need to be around people who will be gentle with you. Doctors send you to PT and psychiatrists because they really don’t know what to do. Don’t bother. You might ask your doctor if he would assign you to palliative care when he refers you to a PM.

You are experiencing a Human Rights Violation to be alowed to suffer this much. This kind of thing is becoming more and more common recently, especially in the US. Real pain management doctors are harder to find. I pray there is one close enough to you.

They can start with an epidural injection just above your highest herniated disc. It has a steroid and (when I had them they used Demerol). Unless the discs are causing weakness or paralysis, surgery is too risky for pain. Baclofen might help. A muscle spasm is a muscle spasm. After I had my first epidural there was such dramatic relief that I was able to get help from PT.

You have been dealt an unusually cruel set of circumstances. You need to be very direct with the doctors and tell them what you told us. You are not a malingerer or a drug seeker. I got 3 budging discs in my neck in 1987-long before the MS dx. I was in so much pain I wanted to die. If it wasn’t for my love for my little baby son I wouldn’t have made it. You have both the spinal nightmare and MS at the same time! I will be thinking of you.

[Dayna]

Thank you, Jules A. back atcha. Everyone

IntoDust, when I was 24, after
my last child was born, I was also dx'd with DDD and L4-5 herniation and buldged disk. That's when the spine started falling apart but the spasticity
started at age 17. Now at 46, I almost feel like my muscles have turned to stone. The first year of marriage in '94, my husband spent so many hours massaging my shoulder and neck muscles, that he eventually got carpal tunnel. No exaggeration. He doesn't work, he's a disabled vet so I knew it was nothing else. My neck and shoulder muscles worked him into surgery within a year. I'll never forget it.

Anyhoo, in my mid 30's, I ended up at pain management and it just happened to be one of those doctors who wanted to keep me coming back, so he fed me Morphine 30mg 3x's a day PLUS 4mgs of dilaudid 4x's a day in between. No joke.

I never had that kind of medication until my mid 30's, but it turned me into someone I never thought I'd ever become. So, to make a long story short, I am now a recovering addict, and NO ONE in this town of mine will give me anything more than NSAIDS, muscle relaxants, and steroids.

Reminder: addiction can happen to anybody, any profession, at any age. I was 38. No matter how hard I cry or suffer, I'm looked at like a POS, a nothing, to tell you the truth.

Hi SNOOPY! I remember you from when I first joined. Nice to see you're still around. I hope you are doing well?

If I understood you correctly, if my spasticity was only from MS, the Baclofen would give me some relief, but because it's herniations/buldged disks, I'm out of luck? To think I forgot to add that I also have s-shaped scoliosis, as well as Kyphosis curvature on top of it all. Yep, broken is how I feel.

(I dont like feeling this way or talking this way. It's so negative. I hate it. I hope I haven't brought anyone down.)

palmtree, I almost didn't see your reply. Thanks for your reply and kind words as well. You're right to a certain degree. I am NOT a drug seeker, but my PM doctor destroyed me, and I'm fairly certain that was his intention. All for money.

Now that I'm in recovery (2.5 years), like I said earlier, I am a POS to them. They will let me suffer because of the opiod crisis, the "stigma" of addiction and a person in recovery, and also because they're scared to death of being sued from family members in case something were to happen to me.

Because of this, unfortunely, many pain people who suffer in chronic pain have committed suicide. I promise I'm not thinking that way. I'm too darn scared to die but living is equally as scary. I just wish I could find a way to live more comfortably until my final day comes. Thank you all for listening. ❤

[IntoDust]

I’m not sure how you feel about epidural spinal injections (ESI), but it is worth going to PM to have at least one done. Some people are terrified of them but I will attest that a good PM doctor will do a fabulous job.

Most PM doctors are board certified anesthesiologists. I had a majorly botched spinal tap in January done by a radiologist (why do they perform this procedure?!) and the idea of another needle in my spine wasn’t very fun by July. (Different procedure but the anatomy is very close!) But under the right doctor, it is literally no big deal. The entire procedure it only felt as if he had placed a paperweight on my low back.

It’s worth considering, especially if you live in a state that has tight restrictions on narcotic medications.

[IntoDust]

Anyhoo, in my mid 30's, I ended up at pain management and it just happened to be one of those doctors who wanted to keep me coming back, so he fed me Morphine 30mg 3x's a day PLUS 4mgs of dilaudid 4x's a day in between. No joke.

I never had that kind of medication until my mid 30's, but it turned me into someone I never thought I'd ever become. So, to make a long story short, I am now a recovering addict, and NO ONE in this town of mine will give me anything more than NSAIDS, muscle relaxants

(I dont like feeling this way or talking this way. It's so negative. I hate it. I hope I haven't brought anyone down.)

Youre not bringing anyone down. Please don’t worry about that.

I live in in a pretty liberal state as far as prescribing narcotics and I think most patients are hard pressed here to even get more than 3 Norco a day! What you were prescribed in the past would be reserved for palliative care - unless it was a long standing medication.
My PM clinic has the goal to get patients off narcotics. They go through a lot of trials with other medications and procedures. This is why I think you should go. There are treatments besides narcotics to try!
I cant afford to go anymore now that I have a big copay for generic Copaxone starting this month. I’m gonna take this time to reflect on my pain levels and try to decipher what may have been rebound pain and what is here to stay.

[SNOOPY]

Dayna, I am so very sorry for all that you have been through

If I understood you correctly, if my spasticity was only from MS, the Baclofen would give me some relief, but because it's herniations/buldged disks, I'm out of luck? To think I forgot to add that I also have s-shaped scoliosis, as well as Kyphosis curvature on top of it all. Yep, broken is how I feel.

I watched my husband deal with herniated and bulging discs twice. He was in a lot of pain, muscle spasms, tingling, numbness, and foot drop. His PCP prescribed muscle relaxers and NSAIDS which didn't offer any relief for muscle spasms, pain or anything else. He was referred to a Neurosurgeon both times and both times had surgery. The first surgery(2008) was minimally invasive, the second surgery(2015) was more extensive. He has 2 titanium clips (L-3-4 and L- 4-5). After his surgery he was put on valium for spasms and opioids for a couple of weeks, if he needed opioids beyond that he would referred to Pain Management, he never needed PM

I would hope Baclofen would help with spasticity simply because some or most could be from MS. The herniated and bulging discs complicates the issue and might not be as helpful, but wait and see. Please give Baclofen a try and see how you feel. Baclofen is started out at a low dose and slowly increased over a period of time, so it can take time to know if it's helping. Spasticity, left untreated, can cause contractures.

We do have a member who has scoliosis due to MS.

Reminder: addiction can happen to anybody, any profession, at any age. I'm looked at like a POS, a nothing, to tell you the truth.

Very good reminder and very true. Dayna, you are not a POS. You are trying your best to get clean. Please ignore the looks or comments that may arise. People like that are the ones that need to do some work on themselves and their lives. It's not about you, it's about them. You are doing just fine

[rdmc]

If I understood you correctly, if my spasticity was only from MS, the Baclofen would give me some relief, but because it's herniations/buldged disks, I'm out of luck? To think I forgot to add that I also have s-shaped scoliosis, as well as Kyphosis curvature on top of it all. Yep, broken is how I feel.

Hi Danya,

First to the baclofen, I don't know what dose you are taking, but the max dosage is 80 mg.per
day. I was on baclofen, orally, till I reached the maximum and all it did for me was make me
drowsy with a little spasticity relief. The reason they may have had you at a Physiatrist is that
Physiatrists handle Implanted Baclofen pumps. For most of us who have had the pump implanted, we've had incredible pain relief. Search Baclofen pump and you should come up with threads about the pump from Bob, Blue Giraffe, Marco...and many others that don't come to mind right now. You can test drive the med with a Baclofen Pump trial, a neurosurgeon does the surgery.

Now to the pain from Scoliosis, not even the Baclofen pump has been able to help me with it.
About 2 years ago I had no back pain but was leaning. Went to PT after a few months, and said
it was getting worse. 1st set of a scoliosis series of x-rays...scoliosis curve was 40 degrees. Since 12/16 I've progressed 28 degrees to 68 degrees on the main curve. Supposedly scoliosis advances at a degree or two per year, because this is neuromuscular scoliosis (i.e. my left side muscles gave up and let my MS pull all my veterbra in Lumbar spine, and some areas in my thoracic and cervical vertebra out of place), the rules of scoliosis change.

The only treatment that would be effective, even at the 40 degree level, was a cervical to L5
surgical treatment. I've seen my neurosurgeon, a deformity neurosurgeon, and a pain manage
ment specialist. And they've tried different pain relief that is not a drug (although I am taking a
low dose pain med just to get by). There are several things that might work like epidural shot, nerve ablation, and a nerve stimulator that supposedly blocks the pain signal that send the pain to the brain.

I'm bent over to the right side, and mostly see the ground when I'm walking. With a walker that's higher and depends on my forearms for support, I can stand up straighter when I use it. The reason I can't do the surgery is that my MS had so progressed that I can't do the rehab. It's a long surgery, 8 hours one day, and 10 hours a couple days later. Rehab is 3 months and can take a year (deformity dr. surmised rehab would be longer because of MS. I don't have the core strength to get in and out of bed, or do the moves that are required for rehab needed to do the rehab exercises and practices you need to do.) Also, I'm going on 66 and
have had MS probably 20 years, diagnosed 17 years ago) Interesting point, my lumbar spine was clean as a whistle 5 years ago, with no disc problems or scoliosis which could be seen in a pump x-ray we took of the area)...that's one of the reasons they chalk it up to neuromuscular.

Short of the small dose of pain med (been on the same dose for MS related pain for 8 years for breakthrough MS pain) is to sit down or lie down...both of which I do a lot, literally all day...that and an ice pack will relieve my pain.

So Danya, what I want to say to you, this post isn't really about me and my issues, it's about you mentioning scoliosis along with other issues and pain in your back. I'd suggest you get to a neurosurgeon or deformity neurosurgeon, and get them to start taking scoliosis x-rays or 360 degree x-rays at regular intervals and see how fast the scoliosis curve is progressing. You really need to do that, and if it's changing, or worsens, maybe the surgery will work for you. Hope your pain subsides, and no matter what you choose is best for you. I'm not trying to spook you or scare you, I'm just saying if we identify the problems we have, and watch to see they don't progress, the going may be easier.