New symptoms
 

Hello All,
I have a question. I have had some muscle pain since I was diagnosed with SFN 4 yrs ago. However, over the past 3 weeks the pain I experience is so bad. My muscle pain and weakness is awful. I can walk but to stand still for even a minute is awful. I don't know what is happening. I called the doctor a few weeks ago and he said he thought I was doing too much at the gym. I haven't gone to the gym since then and the pains are just so bad. I don't know where to even turn to. I just have a dx of SFN idiopathic.
Any thoughts from anyone would be appreciated.
Thanks,
Hopeful:(
I looked up my meds doesn't look like it is from them. I've been on them for a while now.

I also have detereriorating muscle pain and weakness, but it is an expected part of my dx as I have hereditary sensory motor neuropathy. (CMT).
I did have an episode where my symptoms all became much worse, as you describe, when I was put on Tricor for high triglycerides. I lost all sense of balance as well. My neuro suggested I might want to stop them, and things improved when I did.
Statins and triglyceride lowering meds can have this effect. Are you taking any?
Even if you have been on them a while, I think they can still create a problem seemingly suddenly, perhaps if your SFN worsened? Lots of people here have experience with them.

Also, does it hurt while you are walking, or do you experience some relief fom it? My legs hurt all the time, and I have trouble standing or kneeling at church, but I find some relief when I am walking, especially in the park or woods. I use two hiking poles, but my morning walk is the high point of my day. I am not sure if it helps or hurts my condition, but I plan to continue as long as I am able.

Hi, I don't take statins or anything for triglycerides. I do seem to get some relief while walking but I am finding I can't just stand still for any period of time. My legs just feel so weak. I kneel every morning and I definitely have a hard time with it. HOw did you get your diagnosis?
Hopeful:(

There are muscle diseases... so I think a doctor should be asked to screen for them.

http://www.mayoclinic.com/health/polymyositis/DS00334

http://en.wikipedia.org/wiki/Polymyositis

another possibility:
http://en.wikipedia.org/wiki/Polymyalgia_rheumatica

My neurologist suspected a hereditary neuropathy from the first visit. EMG/NCS was abnormal. She sent me to johns Hopkins where I had the skin biopsy which confirmed advanced SFN, another NCS confirmed large fiber neuropathy as well, with muscle wastage. I did not want a spinal tap or all the Athena tests, although they offered to do them, as there is no treatment. Both neuros agreed with my decision and threw me back to my PCP for pain management. My feet and ankles have noticeable muscle loss in the past two years. They are really thin.

But this is expected with my DX. Mrs. D. Is right, a sudden change is unusual and could be a lot of things, worth investigating. Have they checked your circulation?

Thanks for the information Mrs. D. I am going to speak with my doctor about those. Suzanne thanks for informatiion also. They have not checked my cirulation ever. I am seriously thinking about going for genetic testing to see if they come up with anything. I have had any test done in a while. I convinced myself that I had a positive SFN and they would probably never know the reason. I don't know what to do now though. I was told Sjogrns then fibro. Unsure anymore. I guess I should give my rheum a call. He thought it was because I over did it at the gym but Inow I haven't been there in two weeks. Sometimes I really hate this. Thanks again to both of you!

FWIW, I've noticed some muscle tenderness and aches in my feet in the past few months when standing or walking for any length of time. It feels like the micro-adjustments made by the foot muscles in maintaining balance. I'm guessing (& hoping) it's just being out of shape from being too sedentary/housebound, so I'm making a point to get up & out more to see if the strength builds up again.

Doc

Hi Dr. Smith,
Part of me wishes I could say it was from being to sedentary but I am still working full time. I'm really busy in work on my feel alot. I also was back at the gym before this started. Oh well, I guess everyday is a new adventure with this illness!
Hopeful

Does anyone know if there is any doctor that you can go to that will work with you trying to get a diagnosis. I'm looking for someone who will keep looking for until they find something or there is nothing left to look for.
hopeful

Diagnostician is not a specialty per se, though advanced degrees are given in it. You might try googling the term, and follow some of the related searches at the bottom of the first page of links. Hopefully, this will help you find a doctor who is willing to work with you.

Doc

I spoke with my rheumo this morning. He wants me to start on Savella. I haven't looked it up yet but I will try it. He said he will start at very low dose because he knows I hate meds. I asked him if this wer him would he go without a diagnosis or would he keeps looking. He said You do have a diagnosis. It is SFN. I said yes but if it were you and someone told you it was idiopathic would you take that or keep looking. He recommended I see a Dr. at Drexel who is a neuromuscular doc. Says it will take me a long time to get an appt. but I'll try the med route until I see her. Hopeful

This is sounding similar to the way my PN is progressing. I've been doing 4 to 6 miles a day either trail hiking or walk-jog-walk on streets -- but lately my leg muscles feel rubbery and stiff, and hurt sometimes. My knees hurt like heck sometimes, though icing after the workout helps a lot. It's not "overdoing it" because I've been working out like this for a long time, and the hurt is new.

I'm going to a new doc next week, with a list of questions on exercise and muscle wasting -- I'll share anything useful.

pain
 

Anyone taken a fluoroquinolone? (Cipro, Levaquin, Avelox) read up on them, your pain could be caused by this. I've been in pain for over 8 months now because of Levaquin.

Did he give you a reason why he wants you on Savella? Savella seems to help with burning and allodynia but alot of people cant tolerate the drug. I myself was thinking about trying it as cymbalta did nothing for my burning pain but I dont seem to have luck with TCA's or SNRI's.

He did not give me a reason for the Savella. I finally worked up the courage to start it on Sunday. I thinks it is making my symptoms more pronounced. Especially the burning. He did not say it was for the burning but for the weakness. He gave me Savella becuase we had tried the lyrica and I could not take it. I am going to try it for at least two weeks. I had the same reaction when I starated Cymbalta but the symptoms went away. Cymbalta helps me alot. The Savella is at the lowest dose possible so he thinks it is OK with the cymbalta. hopeful

Did your doctor tell you to take BOTH Cymbalta and Savella?

That is a MAJOR drug interaction and not safe:

http://www.drugs.com/interactions-ch...273,3101-13615

I am surprised the Pharmacy let you have them!

Not sure why he would RX two SNRI's.

Usually they add lyrica or gabapentin as those drugs have synergy with TCA's and SNRI's. So what it dose is make the cymbalta work better or make it work at a lower dose.