Pain Thread
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KarlaYP
Posts: 4,439 Member
So, how is your pain today? I thought we could use a thread to discuss what we live with everyday! Only others who experience chronic pain can relate, and we need to vent to people who understand sometimes!
I got my Botox for Cervical Dystonia last Friday. I get them every three months. The Botox works by paralyzing the muscles thereby making them unable to spasm and produce neck pain, and migraines. It works very well for me, but begins to wear off around week 10. And my goodness the pain is terrible once those muscles wake up! My pain shoots to a 10, and stays there with barely any relief from the Tramadol. These are days when I wish I still had some of the heavier medicines available! At least it doesn't last! After I get the Botox it will settle back down to the 2-3 pain levels that are tolerable! Wish the insurance would allow dosing sooner than 12 weeks to prevent this, but I'm at their mercy, just as we all are!
Before I began eating a Low carb high fat diet (LCHF) the Botox would take two weeks to kick in, but now it will work within 24 hours! I believe the LCHF way of eating (woe) has helped improve my overall inflammation, making the effect of the Botox quicker! Another reason to stick to the LCHF woe!
Hope your pain levels are tolerable today! Gentle hugs!
I got my Botox for Cervical Dystonia last Friday. I get them every three months. The Botox works by paralyzing the muscles thereby making them unable to spasm and produce neck pain, and migraines. It works very well for me, but begins to wear off around week 10. And my goodness the pain is terrible once those muscles wake up! My pain shoots to a 10, and stays there with barely any relief from the Tramadol. These are days when I wish I still had some of the heavier medicines available! At least it doesn't last! After I get the Botox it will settle back down to the 2-3 pain levels that are tolerable! Wish the insurance would allow dosing sooner than 12 weeks to prevent this, but I'm at their mercy, just as we all are!
Before I began eating a Low carb high fat diet (LCHF) the Botox would take two weeks to kick in, but now it will work within 24 hours! I believe the LCHF way of eating (woe) has helped improve my overall inflammation, making the effect of the Botox quicker! Another reason to stick to the LCHF woe!
Hope your pain levels are tolerable today! Gentle hugs!
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Wow, reading this was like reading an autobiography! I feel for you. I get Xeomin injections for cervical dystonia and it tends to wear off around week 10. I also have Tourette's which complicates things. I usually also get trigger point injections (dry and w/cortisone) each month in between. Problem is I recently moved, changed insurance companies, and just recently got all my records transferred over. I had my last Xeomin treatment in late January and have been completely without treatment since then. My pain today was about 7-8 with difficulty moving my head. I've been burned badly and had severe gallbladder problems so that's my "level 10", but with treatment my pain is 1-3 at most. I don't have my new patient appt until 5/27, and then need to wait probably another month to be treated.
It's interesting your observations re: LCHF. I noticed my "onset" of Botox/Xeomin treatments shortened when I really got in to IF. My neuro mentioned the big role inflammation plays in this disorder. I have never gotten much relief from typical pain relievers. I take baclofen, which is an anti-spasmodic muscle relaxer and Voltaren, which is a topical NSAID which is the only pain relief that seems to work for me. Unfortunately it's very expensive! Gentle hugs to you, and feel free to add me as a friend if you'd like! I've never met anyone else with cervical dystonia.2 -
Boy oh boy! Can I relate! My appetite is down due to the rheumatoid pain. I don't think Xeljanz is working. Tramadol helps ...barely! What really helps is prednisone in larger doses. Unfortunately the doc won't give me more than 10mg per day. I feel pill choked too. When I look at my drawer I get kind of deflated. It seems all of the meds together is just not effective enough. On the other hand if I had no medication I'd likely be in a wheel chair. That's what I say to myself so I feel better. I've had massive head and neck pain recently. I'm back to having nausea every morning as soon as my eyes open. I'm nearly in a panic knowing I must face another day with this crap. Between the pain, nausea, dizziness, flu feeling and exhaustion I find myself having difficulty remembering things. What's next? This all started when I was young after having two children, endometriosis took my fertility then auto immune part killed my thyroid. I have other issues now (yay!) but I'm going next week for more tests. Please let it be nothing?! The other thing is fighting this disease inside myself. I look fine on the outside but I'm screaming on the inside. Sometimes it's nice to know others can relate but then again I'm so very sorry this has happened to you guys. You do have my sympathies. It's just not right.
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This past November I returned to working part time (I'm an RN), after being unable to work for ten years (due to the pain!)!! It's been wonderful! I love being able to , again, use the degree I worked so hard for! But (yep, there's always a "but"!!), after a couple of months I began having a new pain! My pain has always been right sided (neck, shoulder, and upper back)! The pain began radiating from my thoracic spine out in both directions, and goes all the way around to my chest (breast level, and up)! The majority of my pain has been muscular in origin through the years, so I assumed this was from the use of those muscles! I had told my neurologist about it, and he seemed to assume the same. So, when I saw him this past Tuesday, I expected the same answer, even though my pain has been near constant for a couple of months! But, apparently he was "slowed down " enough to hear me on this day! So, I now have a new diagnosis of "Transverse Myelitis" (nerve pain, not muscular!), and am having an MRI on my brain, this coming Monday, to try to determine the cause. My research has shown me that they usually are unable to find a cause, and consider this to be "idiopathic", but some causes are Multiple Sclerosis (eeeek!), or can be an immune reaction to vaccinations (since returning to work I've had to vaccinate for Hepatitis B and it tops the list!!)! I am learning more, but can't do anything until the MRI is complete. Luckily my doctor has me coming to his office right after, so he can review the images with me (sooooo much better than waiting for another appointment!)! So, by Monday morning I should have a treatment plan in place! Meanwhile, he did give me some good pain medication that's helping with that (thankfully!
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Thanks for allowing me to vent for a bit! As you all know, it's great to have people listening who truly understand!
On the weight loss front, I hit a new low this week! I'm now 168 (3pounds from goal, and no longer "overweight"!!), and I'm so proud of this!!
Gentle hugs to all! And @lalepepper, I'm sending you a friend request!1 -
OMG! This upper back pain is relentless! I now have a new diagnosis to add to the list, "Transverse Myelitis". Did an MRI to try to determine the cause. It showed that it's not Multiple Sclerosis (thankfully) causing it. So now it's considered undetermined (idiopathic). Treatment is pain medications! I had worked my way down to tramadol, from Dilaudid (for the last two years!), and am now back on Morphine! Ugh! I'm allergic to Tylenol and ibuprofen, so I can't take any lortab q, or Percocet types of medications, and plain codeine eats a hole in my stomach. So, morphine was the next option! I don't want to be back on the road to dependence, and tolerance, like I was on for many years before two years ago! That's a terrible rollercoaster! I did tell my doctor that I did not want extended release opiates ever again. I believe this is where the dependence comes in. With the "prn" medication I'm able to go a day, or two, without it and not experience withdrawals. I wish there were an answer for my pain that was complete, but it doesn't look like that's in the cards for me!1
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I feel like a weenie with my pain issues after reading Karlottap's posts. I wish you well.
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Please don't feel that way! Our pain is just that, "ours", and is bad for each of us! I hate that any of us have to deal with chronic pain! It's nice to have a group of folks who understand the struggle!
Gentle hugs!0 -
Update from me! I've got a whole new diagnosis! I'm told I have Idiopathic (means the cause can't be found) Transverse Myelitis. Is an autoimmune disorder of the nerves. Mine has affected me at the thoracic level of my spine, that makes the pain wrap around my ribs to the front of my chest. I've suffered from the same pain for many years, but it into wrapped on the right side.
Apparently working again has caused the problem to spread. It's a bummer, but I'm formulating my resignation letter, in my head, right now. I can't push stretchers any more, nor mop the floors, as expected with the job. I had shown wonderful improvements in my pain levels, but not good enough to work again.
Even just part time! Boo! 1 -
Hi all. I'm new here. I'm sorry to hear about your pains, but glad I'm not the only one on mfp who has to deal with the pains while losing weight. My particular issue is something I've been dealing with since February. My hands just suddenly started getting extremely painful, with bouts of tingling numbness and lightning sharp pains. Sometimes it feels like I'm being struck by lightning, and sometimes it feels like I've stuck my hands in ice water. Weird sensations for sure. Recently the veins in my hands started becoming more prominent and parts would turn blue.
I did finally find a doctor who can help me. He gave me some difficult to pronounce diagnosis that basically means my veins are acting up. He doesn't know the cause of it, but he's teaching me strategies to help ease the pain and return color and sensation back to my hands temporarily. Those strategies, as well as compression gloves, and physical therapy, should help. Still wish I knew the cause of my veins acting up though.1 -
I'm sorry Karlotta about what's happening to you. It's sad you had gone back to work with all the future hopes then have this stumbling block once again.1
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I was in a very bad place when I last posted! Still not great, but betterish!
I decided to discuss my pain response to these certain aspects of my job with my immediate coworkers. I felt they would understand, but wasn't sure. They told me they would've been upset if I quit for those reasons (they really like me!), and haven't allowed me to perform the tasks that hurt me! I've been able to work with minimal pain this past week (not needing morphine has been wonderful!)!!
Thank you all for the support, and understanding!! I'm so happy to have good things to report!!1 -
That's so good that your coworkers seem understanding. Sometimes we are in situations that ppl completely can't get it. I wish you the best.1
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Thought I'd pipe in with a pain post and revive this thread if no one minds. I have undifferentiated connective tissue disorder. It's an autoimmune disorder which can mimic Lupus, RA, and fibromyalgia. I can go weeks with no major issues and pain levels in the 2 or 3 range, and then can flair up to a lvl 10 pain. muscle weakness, swelling, nonworking joints and edema. I take Plaxinol daily as well as furmosimide for fluid retention. I also take Synthroid for my dead thyroid.
My Vitamin D level has dropped as low as 10 so now I'm also on mega doese of Vit D and I'm seeing lvls up over 20 for the first time in 5 years!! This is good news I'm hoping for my body to realize it's okay to lose weight.
This week pain levels have been about 4 or 5 with a minor flair up going on in my joints, mostly the spine and shoulders this go around.
I hope all are having a good week so far!
Iris3 -
Im 36 ive been having troubles with neck and shoulder pain for the last 12 and a half months currently on nupentin for the pain plus other pain killers, Ive been eating alot of crappy foods lately and want to get back into eating healthy again and regular exercise... Ive been using the resistance band the last few days and some yoga but with the neck pain it makes it hard to motivate myself to do anything Im due for another mri next month so yeah feel free to add me...0
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It's so tough to keep this thread up when in a flare up of pain, and mine has been a few months long thjs time! This time has been stress induced!
Our local health system fired my long time (18 years) neurologist who gave me Botox for migraines, and dystonia, every three months (and provided treatment for my fibro too), this past November. He didn't lose his license, but the hospital didn't want to continue his contract and said it was because of how he was choosing to treat MS patients that wasnt up to acceptable practice. This is BS though! My doctor had been there thirty years and was too expensive to keep after they are having to repay misspent retirement funds of their employees.
So, the stress of finding another doctor to continue my care has kept me in a pain flare since then. Add the fact that doctors are scared to write prescriptions for pain medication, and I've been having to tough it out without any pain medication! Has led me to eating junk for attempts at comfort measures and a rollercoaster of pain from eating junk (corn chips and cheez it crackers!)!
Just yesterday I finally found another physician willing to assume my card by getting the botox ordered, and getting me the medications I need! The past six months have sucked and I'm hopeful that i won't ever have to go through that again!
Now, to re-lose this weight and get my life back on track!
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