Pain from MS

[Mynamegoeshere1]

mommy3angels

mommyto3angels

How can you distinguish which is MS pain and which is Fibro pain? I was diagnosed so close together. I do think tht the rain coming definitely bothers the fibro part, but could be wrong. I base that on one of my aunts, but I was wondering if you could help me on that aspect.

and 22cyclist- bilateral trigeminal neuralgia. OUCH! How do you manage to stay walking? What are they treating you with? They have mentioned I might possibly have it on my right side, but I don't think so because my Aunt has it and she is Miserable completely. I had to finally take her to a neuro and tell him what was going on as this is the 2nd time she has had her attacks and the gabapentin wasn't hitting her pain and had him give her tegretol. that helped but makes her loopy. I cannot imagine seeing someone dealing with bilateral. I feel for you!

[mommyto3angels]

I'm not much help

mommyto3angels

How can you distinguish which is MS pain and which is Fibro pain? I was diagnosed so close together. I do think tht the rain coming definitely bothers the fibro part, but could be wrong. I base that on one of my aunts, but I was wondering if you could help me on that aspect.

and 22cyclist- bilateral trigeminal neuralgia. OUCH! How do you manage to stay walking? What are they treating you with? They have mentioned I might possibly have it on my right side, but I don't think so because my Aunt has it and she is Miserable completely. I had to finally take her to a neuro and tell him what was going on as this is the 2nd time she has had her attacks and the gabapentin wasn't hitting her pain and had him give her tegretol. that helped but makes her loopy. I cannot imagine seeing someone dealing with bilateral. I feel for you!

I can't really tell them apart all I know is I'm in pain all the time lol. I take lyrica, topomax and cymbalta daily for the fibro and then Norco which is a opiate pain med, basically the same as vicodin but with alot less acetamitaphin and a lil more stronger as needed. My pain managment Dr wants me to get a steriod injection in my spine which were going to decide on tues when I go back. He said it will take away alot of the inflamation and help reduce alot of the pain. I'm going to try it because at this point I am willing to try anything.


I have a very high tolerance to pain pills so not much makes me loopy. I also think the only reason I have stayed as active as I have is because of my kids. I have 3 kids and I force myself to keep up with them. I pay the price at night and take more pain pills than most people to do it but I manage to make it thru the day. My boys get to football practice 4 days a week and their games every sat with mom cheering them on. I also have my 4 year old daughter to keep up with. Plus 3 giant dogs which keep me on my toes lol.

I think additude has alot to do with both of these diesese. My step sisteer has fibro and she is almost bed ridden and is 31 like me but she doesn't force herself to be active. When she's in pain she will stay in bed and complain where I will take a pain pill and grin and bear what ever pain is still there and go on with life. I know theres a stigma towards people who take pain pills daily but to me if they help you live a normal life then thats whats important.

If you are in daily pain and your nuero or primary dr isnt helping you ask to see a pain manament dr. I just started seeing mine but he switched me from the vicoden to the norco which did make a differance and we are going to do the steriod injection into my spine for the inflamation and I have real hope that will greatly reduce the pain.

[Mynamegoeshere1]

Good luck with the steroid treatment. I am at the point where I am ready to do anything. I am also at the point where I stay at home most of the time because my pain and spasticity is not being managed properly. I just changed to an MS Dr. that specializes in specifically MS and I see a rehab Dr on Wednesday, as well as start my new MS medication infusions Wednesday.

I am going to request a test for the baclofen pump. The pills are doing nothing for me. My husband will drop me off at the door of a grocery store and it is all I can do to make it in the door and to a cart before I either start crying in pain or my legs lock up. I wake up most nights over and over in pain because my legs and randomly my butt tighten up on me and will not loosen up and it is very painful. I have a bottle of Vicodin that I have to make last (30 pills) because my new Neuro doesn't want to give them to me and my old Neuro hated to prescribe them also so no refills. I take them when I am at my wits end........Like right now, but I am in so much pain that it isn't even touching it! Lovely life we lead huh! haha. I am hoping that with the new dr, new treatments and hopefully the baclofen pump and possibly a pain dr that my quality of life will get better. Luckily my mind is not all there so I am on disability and neither is my body so................

[mommyto3angels]

Good luck with the steroid treatment. I am at the point where I am ready to do anything. I am also at the point where I stay at home most of the time because my pain and spasticity is not being managed properly. I just changed to an MS Dr. that specializes in specifically MS and I see a rehab Dr on Wednesday, as well as start my new MS medication infusions Wednesday.

I am going to request a test for the baclofen pump. The pills are doing nothing for me. My husband will drop me off at the door of a grocery store and it is all I can do to make it in the door and to a cart before I either start crying in pain or my legs lock up. I wake up most nights over and over in pain because my legs and randomly my butt tighten up on me and will not loosen up and it is very painful. I have a bottle of Vicodin that I have to make last (30 pills) because my new Neuro doesn't want to give them to me and my old Neuro hated to prescribe them also so no refills. I take them when I am at my wits end........Like right now, but I am in so much pain that it isn't even touching it! Lovely life we lead huh! haha. I am hoping that with the new dr, new treatments and hopefully the baclofen pump and possibly a pain dr that my quality of life will get better. Luckily my mind is not all there so I am on disability and neither is my body so................

Ahhh I feel for you. I was at that point. My nuero explained to me that they get auditted for prescribing any type of opiate pain medication more than vicoden and for prescribing it long term which is why they are so hesitant about prescribing them (but I'm in cali) He's the one who recomended the pain managment Dr. Like I said before I have only been to 1 appt with him so far and my next is tommorow but he was a blessing. I hope you can get in to see a pain managment Dr because it made such a differance in the 4 weeks since I started seeing mine. Good luck and keep me updated.

Remember you have to take control of your treatments, your the one who deals with your symptoms daily so fight for what you feel you need!

[cbos mom]

Pain and MS

Yes. I have had lots of pain from MS since my diagnosis in 2006. Finally, this past year, after really telling my PCP how much pain I was having, she recommended Cymbalta. I can't tell you what a lifesaver this has been.
I feel so lucky that just the 30mg cap daily has made a huge difference in my pain levels.

I did not realize how the pain was affecting my whole outlook on life. My pain was mainly left leg, back and neck. I had done massage for years and taken Ibu and Aleve but these never really resolved the pain competely.


My former PCP had originally told me pain was not a condition of MS. When I shared that with my MS specialist, he was shocked! He said pain is one the MOST COMMON side effects of MS.

So, please do not let yourself suffer. Talk honestly with your PCP or Neurologist about your pain.

[Leeaura]

I don't have pain yet but

I wonder if that may be because I've taken 120 mg of Cymbalta (for depression) for several years. I've been told this is a large dose so I think the lack of pain is a real possibility.

[Mynamegoeshere1]

to cbos mom

I take 120mg of Cymbalta daily and while I thought it did nothing for my fibro, I stopped taking it for a few days to test it. It definitely was helping, but not all the way. I still hurt miserably. I am hoping the physiatrist helps me out a lot tomorrow.

[Elisabetta]

I am glad I just read this. I have been struggling with a chronic gnawing pain in my left side for the last 10 years following an infection with Epstein Barr virus. The pain comes on in episodes of dramatic intensity at times, and then inexplicably recedes, though never completely. In addition to the side pain, I often have a general achy flu-like feeling and joint pain in my left knee and hip.

From the time the pain first showed up, I have also dealt with many other problems such as fatigue, susceptibility to infection, sun allergy, heat intolerance, vertigo/balance issues, trouble thinking clearly... I could go on. I have seen countless drs. and tried many treatments. I have had test after test after test, leading only to more questions and no answers.

This has been a brutal summer for me. I had been doing so much better over the past couple years that I truly hoped I was getting over my problems. Then in June it all came screaming back. The pain. The crushing fatigue. And a few new problems: eye pain and blurry/faded vision in my right eye. A strange buzzing in my right foot. A host of other things... The bottom line is my PCP now suspects MS and is exploring that possibility. But one sticking point for him is that he says MS does NOT cause pain. And I have so much pain. But maybe its not that cut and dry?

[MyGirlsMom]

My neuro recommended Amitriptyline for pain and it has taken the edge off, even though it never completely goes away. I only take a small dose, so perhaps if I took more, the outcome would be better. The combination of Amitriptyline and gabapentin really seems to work wel and has truly helped my bouts of depression and anxiety.

[debbiems]

I have a lot of pain in my back, shoulders and sometimes my legs. The pain in my back is from the nerve damage (I had MS for 32 years) and from sitting in a wheelchair. The legs in the result of spasticity. I'm not one to take pain pills, so I do other things that are pretty effective. For the spasticity, I make sure I stretch everyday, either through land exercises that I learned from my PT or in my swimming pool. For my back, I use ice packs, stretching and deep breathing/relaxation techniques using yoga. Recently I tried medical marijuana which is now approved in my state, and it really does help me with both the pain and the spasticity. But I don't use it that often--only when things get really unbearable.

[tambrown]

I have pain nearly all the time but I have fm so I never know for sure what is causing the pain fm or ms very frustrating .I'm to the point I just try to treat pain and not worry whats causing it . Have you ever been teated for fibromyalgia ? Tammy

[Thomas Jackson]

MS is pain free for some. But I would not see a neuro, PCP, or specialist that believed MS is pain free. Even with my serious cog fog , I have a problem that anyone could be so ignorant. I have often thought about the poor people in the MS Dark Ages when even doctors believed all MS was pain free.
I call MS the No Two Alike disease.

[valeriem2220]

I have been in pain 24/7 for years.
Before my diagnosis I spent a fortune on shoes for work thinking that was the problem, 12 hours walking or standing on concrete floors. I even bought high top tennis shoes thinking maybe my ankles needed some support because they hurt so bad. The high tops didn't work.
I was looking for another job a few years ago because of the pain and thought I just couldn't do this kind of work any longer. I would be brought to tears many many nights because of this pain in my legs.
My Dr finally gave me Baclofen which has helped immensely. But the pain is now coming back and it seems the med isn't working as well as it used to. Can your body become accustomed to this med and the med becomes less effective?
Last night at work I was holding my sides because it literally felt like I had been punched in the ribs many many times. To touch my ribs was horrible pain and it was taking my breath away. I don't know why they felt this way.

The pain issue is one of the symptoms that are the worst for me and I just want it GONE.
I believe being in pain every single day is making me depressed. I feel like I just can't do this any longer.
I cried to my Dr a few years ago when he couldn't make the pain stop that I was far too young to be living with this pain every single day. Far too many years left in my life to suffer like this.
He got angry with me for crying and I do believe he started to think that I was making it all up just for meds. I HATE pain meds...I HATE the way they make me feel...I cannot understand how people get addicted to these actually, but I do not want pain and I am not making it up and I am not a pill addict. This of course was before my diagnosis.

My neuro now knows I am in pain and actually mentioned to me first, but we are trying to get it under control with Baclofen right now.

[fourcats]

pain

I am on the same page as many others. I have constant pain. I will sit and scream from the intense pain. It goes through me with horrible intensity. It does go down--thank god---but never is away.

Not that long ago the doctors used to tell MS patients that MS does NOT cause pain. Finally they have acknowledged the pain. How in the world they thought pain was not a part of this disease is beyond me.

Anyway,...not really reassuring what I am typing, but I can tell you that you are not alone and I am so sorry you too have pain with this disease. Some people don't and yet I think most do. Different levels perhaps, but still in pain.

I try to find something interesting to do to keep my mind off the pain, but when it is really bad,...I cry and just want to soak up some love and sympathy from my hubby. It is not easy.

I wish you the best in dealing with this. Please accept a hug from me from here to there.