Last reply 4 months ago
Tired of pain, just tired

I’m spastic out the wazoo, and I have a headache that won’t quit. I’ve had it a year but it’s really pushing my limits tonight. My doctors don’t care about my pain, and all they care about is that I don’t try to kill myself again on their watch, but they won’t do anything but have social workers call me endlessly. I’m not sure what I’m supposed to be doing to function. My quality of life is zero. The best thing to happen in the last year is buying an MS shirt and wearing it out to Walgreens and limping around to buy puppy training pads.

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


stumbler
4 months ago

@jessicamulein , no-one should be suffering from a permanent headache. If your present Doctor is not helping, you need to get another opinion.

Have you had any tests to try and diagnose the problem?


grandma
4 months ago

@jessicamulein If you had to go out last Year for puppy lads that normally indicates a puppy? I have just lost my 2 Airedales, the old chap to my ex partner and my darling 2 yr old to Airedale rescue. My house seems so empty and they were my reason for getting up in the morning, they were the only thing that made me glad that my attempted suicide 3 yrs ago was unsuccessful. Keep plugging away and like Stumbler says, get the headache investigated. You are a VIP, treat yourself as one and remember how important you are to you.


jessicamulein
4 months ago

Headache was checked out by two hospitals inpatient and two neurologist groups in three states. I’ve done Botox and regular meds, but no one has offered anything for the pain. I’ve got a headache that’s never below a 5-6 and often in the 7-8 range and I can’t work due to the headache, and that excludes other MS fun like spasticity, burning, etc. I’ve been at pain limits for most of a year, can’t sleep, been reporting to doctors I can’t take it for months, and asked about assisted suicide and gotten no help. Finally killed myself December 8th, and was found by my wife when she got home and resuscitated and since then I’ve had regular calls from social workers at the clinic and from my insurance company, but nobody is still doing anything about my pain and I still am not happy to be here. Not sure how to keep going. My dog hates it when I smoke medical marijuana- she senses the change and I often have seizures which makes her bark. Nothing really works. Anyway, I told my social worker on Wednesday all this and they said they’d talk to my doctor and nobody called Thursday or Friday so I’m pretty sure they’re not going to offer anything to help with the pain. I’m so screwed.


strictlysoca
4 months ago

@jessicamulein please show what you have written to your wife now. Please don’t wait. If you cannot do this then please call the suicide prevention line and start talking. tel:1-800-273-8255 Sending vibes for resolution of your pain by other means. It is possible. ❤️💚💛🏝🙏🏼


jessicamulein
4 months ago

My wife is aware of my pain and is the only one doing anything to keep me going. She’s sleeping next to me while I take care of the puppy and keep her from biting. I’m ok in the immediate, but if someone at my doctors office doesn’t help soon I don’t know how long I will hold out.


stumbler
4 months ago

Would any of our American members be able to provide any advice as to how @jessicamulein can escalate this situation?

Thanks you in advance.


edmontonalberta
4 months ago

@jessicamulein

Jessica – since I was bored I just finished reading your Twitter page. Cute puppy; cocker golden retriever? She is going to drive you nuts unless you train her properly… 😉


jessicamulein
4 months ago

We’re working on the training. She’s doing pretty well. She seizure alerts and goes on the pads unless she’s pissed off. 🙂


vixen
4 months ago

Hello @jessicamulein. I’ve been a lifetime headache sufferer, aside from the MS. What changed my life, was amitriptyline, not sure what it would be branded in the US. It’s an antidepressant but has other qualities which help people with MS too. Also, have you seen a really good chiropractor to look at any anomalies in your musculoskeletal system? A really, really specialised massage would surely alleviate some pressure, and would at least relax you……


jreberg74gmail
4 months ago

@jessicamulein my first thought was to suggest a “good” chiropractor as well. Its not magic, but they can do wonders. Have you tried acupuncture?


mlgilber1
4 months ago

Have you seen a pain specialist? I’m in the US and my MS specialist has referred me to a pain specialist that I see every month to help manage my pain. Also, I physical therapy has really helped with my pain.


grandma
4 months ago

I’ve just seen on your bio that you’re in Seattle, as @stumbler said can any of our American friends in that neck of the woods offer any help? Here’s hoping🤞😍


jessicamulein
4 months ago

Many months ago I was referred to a pain medicine person scheduled in November, and that got bumped to February. Even then it’s just pain psych, so I’m not sure what they’re going to be able to do.

And yep, Seattle area. I’ve not tried accupuncture- afraid of needles, but maybe a good chiropractor I could be talked into. My upper neck and spine kill me so much.

I was on amitriptyline years ago but haven’t been since. No one has offered or discussed it since.


jreberg74gmail
4 months ago

@jessicamulein , if i were in seattle, i would give belltown spine and wellness a shot. I also have a co-worker who does not like needles, tried acupuncture as a last resort for an issue and swears by it now. If your eyes are closed…. You wont know whats going on. Good luck, i hope you find a measure of relief.


mlgilber1
4 months ago

My pain specialist gave me meds to help reduce the pain during the first initial visit which was only with a PA and not even the one I see now so hopefully they do something for your pain. The first PA even referred me to a different pain doctor who specializes in pain pumps for if I need one later down the line. I did go to a different pain doctor first that my primary referred me to and they did nothing. Sometimes it takes a little bit to find someone who understands. I hope your appointment goes well when you do see them.


grandma
4 months ago

I had acupuncture a few years ago for a very painful strained knee. Like you was scared stiff if needles even though I injected Avonex intramuscularly once a week, but seeing dozens of needles being put in was a different matter, but it was ok. Had to lie for 20 mins each time while it worked, took a talking book and just relaxed. It really us ok and worth trying.📯😍


strictlysoca
4 months ago

Glad you feel safe today. Wishing you well


leogirl
4 months ago

@jessicamulein, sorry you are having all this pain. I had a horrific pain in my mouth 5 years ago. I thought it was that I needed a root canal but the dentist wasn’t sure. He did a root canal and it took away a lot of the pain. I saw a physical therepist awhile later about foot pain An he said the pain I was having in my mouth was actually in my jaw, and it’s called TMJ. I looked it up at the time and people called it suicidal pain so I know what you are going through. He did a massage and it went away for weeks. I still get it sometimes and get it massaged when it gets bad. I also go to an osteopath and he has worked on it, he asked me if I get migraines as it can cause this as well.

Here is the address of a utube video on this. With a massage that helps. Hope this helps you X


cammo
4 months ago

@jessicamulein In Australia we have Doctors who specialize in pain management… they are usually anesthetists. I know this as my sister in law works at a pain management clinic and she has a lot of patients with MS. Is there anything similar in your neck of the woods as there are a lot of pain management therapies out there. … you dont have to grind it out or top yourself.


cosine
4 months ago

@jessicamulein

Continuity of care is very important. Do u have a general practioner? Its good to repeatedly see one dr than try 5/6 different ones. Because the Dr u see isn’t going to do the same thing each time u see him/her they’ll try different things and they’ll know you more personally hence understand you better.

I hope you feel better. What standard meds are u taking. Some can make you feel abit more suicidally. Like for some reason when my dose of gabapentin is increased for the first day i feel soo tearful and like so like reckless..

Its so sad that u feel no body cares about your pain. But they probably think u are drug seeking to end it. So thats why its good to have continuity of care so ur Dr really knows u.

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.