Progress Update: Pain, School, and Work

multiple sclerosis ms joint pain ache

Yeah, I know, I need to work out… That or I need to find a model for these pictures already! Actually, I’m currently looking for one on one of the model forums I’m part of ha ha but anyways!

The pain has been on and off… I don’t get it… The day before yesterday I didn’t even want to move and yesterday I felt fine! Today once again my heels hurt, my fingers hurt, my chest hurts, and worst of all, my shoulders hurt… I hate this! Right now the only pain relief I have are pharmaceutical narcotics which I am not the biggest fan of… But taking a hot bath is kind of out of the question and a cold one does not help achy joints or muscles… At night if the pain isn’t too bad I can get away with taking my sleeping medication and ibuprofen and that seems to help me sleep but during the day I’m pretty much out of luck…
Like all of my other symptoms I’m learning to just suck it up and work around it the best I can but this merely gets me through my day and I just started school so I’m going to need a little bit more than that… The pain only feeds my fatigue, it’s only been two days and I’m already finding it hard to stay awake in class, and all I want to do when I get home is sleep but I don’t because that tends to make the pain worse. I really want to see a doctor about this already because I am still rather skeptical that this is an MS related pain… I don’t know, it just feels like joint pain, muscle aches, almost like I have the flu or something but I don’t know how to explain what may be causing this and why it’s so on and off… Does anyone else experience this?
Luckily it looks like I might be seeing a doctor pretty soon who is willing to prescribe me LDN but I still have to make some phone calls and see if I can afford the visit… My neurology appointment is coming up soon as well so hopefully I can get a steroid treatment and plasmapheresis out of that but I’m not sure how all of this is going to work with school… I might call ahead and see if they are even willing to do the procedure and if so whether or not it’s outpatient or if they will have to admit me to the hospital in which case I would probably try to drop my class while I still can and get whatever money I can back for next semester… I think that’s what I’m going to look into as soon as I post this entry… Time is not on my side as always…
If anyone has experienced the kind of pain I am describing please, please, please, post a comment sharing your experience and how you dealt with it.
Also for those of you who have made donations I greatly appreciate it as every dollar has truly help me a lot!
Oh yeah, speaking of money, I am technically employed! I have been doing freelance photography work for a local online newspaper, the “Loma Linda Patch”!  I have only done a couple jobs so far and it doesn’t pay much but since disability cut me off every little bit helps… Besides, it’s cool to finally be able to say that I have been published! My first job was to take pictures of the 30th annual picnic for families with children with cancer and my last job was to cover a local food truck event! Check them out!

9 Responses to Progress Update: Pain, School, and Work

  1. Hi Matt, I can't help about your physical pain. I'm so lucky that my MS doesn't give me any physical pain, so all I can say is to keep on with it and keep doing the best you can. You are an inspiring young man.

  2. Matt Allen G says:

    Thank you! I thought I was going to be pain free but looks like that might not be the case, maybe its just temporary. It doesnt feel like sever nerve pain like when I had inflammation against my sciatic nerve… THAT was the most painful thing I have ever experience in my life! It's pain like THAT that I think people like Montel Williams has to go through so I'm still lucky.

  3. Sherri says:

    i have pain… almost every single day… the worst is on the left side of my neck running up to the base of my skull

    nothing helps really… i too have the narcotics but since i work in a cop shop, probably not a good idea to take them too often… i take 600 mg ibuprofen and dayquil about 4 times a day… this combo gives me enough relief to function…

    other than that i have minor aches and the like… knees, legs, back, rib area… they come and go…

    oh and the biggest, most awful, makes me want to die pain… trigeminal neuralgia… holy shit! i would not wish that pain on my worst enemy ever…

  4. Matt Allen G says:

    Well your the first person I have talked to who has the achy knees, legs, and back like I do. Although the lower half of my body (except my heels) seem to be doing ok lately its just my upper body thats giving me the most problems right now…

    Man… trigeminal neuralgia… I can only compare that to a sciatica which as I said, was the WORST PAIN I HAVE EVER FELT. I actually collapsed in pain on that one, that's never happened to me before… I feel for you, this pain sucks but it's not as bad as others have it so I try not to complain. Sometimes it gets bad though and is rather debilitating…

    Vicodin, Oxycontin, barely takes the edge off in fact… Vicodin is a waste of time. Cant take any more at once because of the acetaminophen and Im used to the codeine so I don't even take that anymore. Oxycontin helps a bit but it scares me because well, it's Oxycontin…

    I just want to see a doctor ASAP and I don't want more pain meds… Something is causing this inflammation and I want to treat THAT not put a band aid on it…

  5. Rosie PL says:

    "I just want to see a doctor ASAP and I don't want more pain meds… Something is causing this inflammation and I want to treat THAT not put a band aid on it"

    Doctors can be keen to create cocktails of drugs, when really stripping back and starting again can be the only way to actually TREAT the problem itself.

    But you want to know what's going on, it's your body afterall.Fighting to get the treatment you deserve is the tough one, I had to have 2 relapses to finally get my first MRI scan in over 11 years……

    It's like you have to prove you're ill enough to be noticed….how many times have you heard "But you look so well?", because MS can be the silent beast, the unwanted guest and it's not always visible…..

  6. Willowtree says:

    I wish I had something more to tell you. My worst pain is due to Trigeminal Neuralgia – in my face and down my neck. I've NEVER felt any kind of pain like that in my life, and I wouldnt even wish it on drs I dont care for. My neuro prescribed percocet and ibuprofen 800, she said if I had more attacks then I'd have to go on an everyday med. Sometimes I feel like Im the only one concerned about possible addiction to these pills. So that keeps me from using them at all or just sparingly. I don't want to have to deal with another issue. Congratulations on the job, That's awesome!

  7. Matt Allen G says:

    @ Rosie – If I hear that I look so well from one more doctor I think I will SNAP and that will NOT be a good thing for the doctor…. Well…. anyone including myself I suppose…. I hate that I have to prove my illness to every doctor. We might as well take acting classes and learn to make it look more obvious so that they will take us seriously and give us the treatment we NEED. Sad…

    @ Willowtree – I try to use the meds I have sparingly as well especially since some of them aren't even prescribed to me… That's right, I can't get in to see a doctor or even get one to respond to my emails so I can't get my own prescription but guess what? Pain doesn't wait… So yes, I have to use medication from other patients, what choice do I have??? I hate this. THIS is what MS patients all over the world have to deal with and it's not right. THIS IS NOT RIGHT.

  8. Anonymous says:

    Taking other people's medication is flawed at best. My wife lives with the pain daily and her threshold is pretty good, but she is a trooper. She also keeps up with me, and that isn't easy. i coach high school football and soccer. Rarely will she miss any game no matter a JV or varsity.
    But enough about her.
    Why no try cutting back on all the extra meds you are taking so you don't build a tolerance to them. I feel for you but keep a stiff upper lip and stay the course and do as you can.

  9. Matt Allen G says:

    Well at this point the good ol' doctors were quick on the trigger to shoot me ovr some oxycodone… I took it for a few days but have stopped as it lost its effect and I am just sick of the pills… Just dealing with it all now…

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