My Intro

[poppymom]

Hi, My name is Patricia. I am fairly newly diagnosed with fibro, just in April 2013. I was diagnosed with MS in December of 2007 and I was already dealing with chronic pain due to the MS. I have been on Avinza, a sustained released morphine, since before my MS diagnosis. I've also been on Cymbalta for 2 years for pain. I've been in a wheelchair for the past 2 years. I had a baclofen pump placed last summer for severe spasticity, especially in my legs. After my surgery, the pain just never seemed to go away. I had to wear an immobilizer for 6 weeks so I couldn't move my torso and that made me so sore through my back and shoulders and hips, but once I could take it off, the soreness just never went away. I did massage therapy and chiropractics, but after a few weeks, the massages just made it hurt worse the next day. Then, it got to where I couldn't even stand for the therapist to touch me at all. By November, my pain specialist thought I might have fibro, but didn't want to label it yet. Then, I fell. For the next 2 months, I really hurt. I also had MS flares and many other problems related to the fall. I was just getting over that fall and in Feb, I fell again. In March, I felt good, so though maybe I didn't have fibro.

Now we are at Easter and I get the worst pain I have ever had in my entire life in every muscle of my body. I can barely move. I can't sleep. I sit up nights and just cry. I'm already on morphine every day and the dose was increased only a few months ago. My pain specialist adds a muscle relaxer and my rehab specialist increase my baclofen pump dose but I get no relief. I have some immediate release morphine and I still can't sleep because it hurts too bad. My husband and my kids can't hug me. I can't wear a bra and I only wear baggy clothes. I can't sit or lay, so I just stand a lot. (I can walk some with a walker and I stand well) Standing just makes my legs hurt more. I finally get into see the rheumatologist 3 weeks after this starts and she diagnoses me with fibromyalgia. By this time, I can sleep about 4 hours. My pain specialist has started me on valerian root, which is slowly getting my sleep on track. I'm on IVIG for my MS and I seem to get some improvement of my fibro after my infusion until it's almost time for my next infusion. I recently started having allodynia from head to toe. When I get these episodes, they usually only last 24-36 hours, but they can be very bad-no one can touch me, no air over my skin, can't move in bed and nothing helps. I'm having one of those days today. To make it worse, my husband is out of town.

I'm feeling a bit overwhelmed at times dealing with both the MS and all that comes with having a very aggressive form of the disease and now having fibromyalgia. This fibro has hit me very hard from the get go too. It's not messing around. I'm glad I found somewhere where there are others who know what I am going through. I hope to find some good support on here.

 

[Ohyesuare]

Hello and welcome to the board. So sorry to hear about your predicament. Fibro is bad enough to deal with it on its own, I can't imagine having MS to go along with it. I hope it is of consolation to you that there are a lot of people suffering on this board as well that you can relate to and discuss anything you like. Wishing you all the best for the future.

 

[mariposa]

Hi, My name is Patricia. I am fairly newly diagnosed with fibro, just in April 2013. I was diagnosed with MS in December of 2007 and I was already dealing with chronic pain due to the MS.

Hi Patricia, and welcome to the forum. There are times that I feel so inadequate when it comes to saying the "right" words that I want to say. This is one of those times. Saying that I'm sorry for what you're going through just doesn't seem to be enough.

How were they able to make the diagnosis of fibro that separated it from the MS issues? Do both of those things have different kinds of pain? Or is fibro pain in places that MS pain wouldn't touch maybe? I'm asking because I have a couple of friends with chronic pain issues and I'm pretty sure the one had mentioned being tested for MS some time ago, so if I could get more of an education about it, it may be beneficial.

I hope you're having a much better day today than when you wrote this two days ago. :-(

 

[poppymom]

There are overlapping symptoms with MS and fibro. The fatigue and the fog are the same in both. I had been dealing with the fatigue for a very long time. I had it with the MS and before. I worked nights as a nurse before MS. I almost never slept. My mantra was "I'll sleep when I'm dead". I was so chronically sleep deprived that I wonder sometimes if that isn't why my body started attaching itself. It decided I needed to slow down one way or another so it made me slow down. When I'm feeling good, I still have a tendency to over do it and my body reminds me that it is in charge and I have to slow down.

The pain is very different. My pain with MS is localized. The initial pain I had with my MS was localized to the center of my back and was sharp. It would radiate but was never generalized and never really ached. The only aching type pain I ever got would be muscle ache associated with a weak area damaged by a flare. For example, my right leg was 95% paralyzed 2 years ago when I had to start using the wheelchair. I have had extensive PT though. Over the past 2 years, I have had lots of pain in that right leg and hip area because we try to work that muscle so much as I relearn how to walk and how to make it work again. The muscles are so weak because the nerves aren't firing properly anymore, so I am having to reteach them how to work. I would also get a little bit sore from spasticity, but that felt more like you do after a work out. Not really like when you haven't worked out in years and you go to a zumba class and go all out, but you work out harder than normal and your just a little sore. That is what the spasticity does to me. I hope all of that made sense. It is really hard explaining pain to someone. The other big difference is frequently my MS pain is also associated with tingling and a pins and needles sensation and sometimes numbness of an adjacent area.

Now, fibromyalgia pain is generalized. Mine starts at the base of my skull where I have my first tender pressure points and pretty much covers my entire body. I had every pressure point was positive when the rheumatologist tested them. It takes very little pressure on those pressure points to cause pain. In addition to those pressure points, my entire body hurts. At times, all movements hurts, all touching hurts, all clothing hurts, sitting hurts, laying down hurts, moving hurts. With fibro, I also get allodynia, which is pain coming from non painful stimulus. I have times when the skin on my entire body feels like it is badly sunburned and it hurts for anything to touch it. Even the breeze of a person walking past me is painful. I get cold easily during these episodes and will get goosebumps which are very painful. Firm pressure will relieve some of the pain, even though that seems counter-intuitive. I am very selective over what I wear at those times. I usually wear a maxi skirt and a loose long sleeve shirt, both of a very soft jersey cotton. I can't wear a bra during this. My kids and husband know they can only hug me very gently during these episodes. All of these things are too generalized to occur with MS. MS symptoms are localized.

Now, the tricky part is getting a doctor who 1) realizes there are differences in the pain of MS vs fibromyalgia, 2)knows the differences between the two and 3) is willing to listen to their patients thoroughly. The last one is the really tricky part. So many doctors just give us their 5 minutes and rush us out the door. I was lucky enough to have a neuro and a pain specialist who give 30 minutes per patient and will allow more time if needed and make sure all questions are answered and no stone is left unturned. These differences really are only useful in the diagnostic phase. For treatment, they are both treated the same. The pain associated with MS is just as difficult to treat as the pain from fibro. MS pain is caused by damaged nerves. The nerves are irritated because they have lost their insulation, so they "spark" all the time, causing us pain. The meds to calm them, like Lyrica, are also used to treat fibro. The other meds used to treat pain in MS are neurontin, baclofen, other muscle relaxers, tegretol, occasionally narcotic pain killers, ativan, and other similar medication are also used in fibro patients. The pain associated with both diseases is notoriously difficult to treat and many patients have to be on multiple medications to effectively get pain control of any kind. Many of us also use complementary medicine to supplement our pain control.

I hope this helps and that it makes sense. I tend to be very long winded when I type out answers. I just always want to make sure I include all the information. Sometimes, I might include too much. I would rather give too much than not enough. If you have any questions about the MS part of the equation, please feel free to ask. I'm more than willing to answer any questions about the disease you may have, or anything else for that matter. I"m still learning about fibro for that matter.

Good luck. BTW, I am feeling much better. Just a little bit of soreness now. Pain is just a little above my baseline, which is much more tolerable. I can function this way. I wasn't functioning very well when I posted on Friday.

 

[mariposa]

Thank you *so* much for that beautifully detailed answer, Patricia! I only knew parts of it, and the differences, so the things you've said here definitely make me feel more "qualified" to help my friends when they are hurting, or simply asking questions. And yes, it all made sense. Long winded, as you called it is never a problem for me because I'm a lifelong learner and I soak up new information as much as I'm able to do.

I'm so glad to hear that you're feeling better today!