Hi everyone,
It has been a little while since I posted ... hope things are okay for you all.
I have definitely improved emotionally in the past month or so, and that's huge for someone like me who thought I will never get out of that rut. Feeling better emotionally has definitely made a difference with how I feel physically, but of course there are some days where I feel my skin slowly burning off .. layer by layer, and feel all of my muscles ache nonstop. Like today! I did a little housework in the morning. Nothing major ... some folding of the laundry, sweeping the floor, and then of course playing with the kids, giving breakfast and snacks, etc ... but I now feel like I cannot move anymore. My entire body aches so much that when combined with the burning pain, feels like ... well who cares what it feels like, it hurts!

I'm not even sure why I'm bothering you all with this nonsense. I guess it's just a vent. Why are all of my muscles hurting me so much? I mean all ... from head to toe. I feel like I worked out for 10 hours straight. Am I just so out of shape? Is there something else I'm missing here? Are all these muscle aches part of neuropathy as well? How do I get myself to not hurt from picking up a few toys from the floor or folding the laundry. Right now, I'm really doing minimal stuff around the house because I know the consequenses if I try to do more.

Is there anyone else out there feeling the same? Any advice?

Btw, I just started getting B12 injections, and this week will be starting B6 injections as well. Hope this will do something for me.

Hugs to all of you out there and thanks for 'listening'

hi Miriam

Sorry to hear that you are having such a tough time at the moment.

As far as I know neuropathy does not cause muscle pain, except indirectly via cramps and spasms in motor neuropathy as then muscles become very weak they can become spastic (which has happened to me - my muscles are weak because they no longer receive correct messages via my damaged nerves).

But, that is only in limited areas of my body, and is not an overall feeling.

If this aching continues, then it may be worth talking to a doctor about fibromyalgia. This is NOT a waste paper basket dx, and many people really struggle with it. My friend has it, and it is very nasty, but can be treated. So, if your symptoms continue, then this may be something worth persuing.

Hope you feel better soon - I feel for you with young kids (mine are now young adults - phew) but I definitely remember the days of struggling with being unwell/exhausted/whatever and having to be an active mum at the same time.

all the best
raglet

Raglet,
Thanks for your message. I brought up fibromyalgia many months back with my neurologist (I initially thought that that is what I may have, maybe in addition to my neuropathy), but he quickly discarded the idea. Maybe worth seeing a rheumatologist? Don't know ... just trying to figure out why I ache all over pretty much with every slight movement.

Sorry to hear about your situation. It's so incredibly difficult to live with this condition, yet we're somehow still here
Wishing you well.
Miriam

I have myopathy and mine is painful. I also have autoimmune crap. I would have that checked out. Have your ANA run several times per year.

I wonder tho, if your issues could be caused by autonomic dysfunction.

If my doc told me my muscle pain was due to Fibro, I would hit him over the head with his reflex hammer. I have had Fibro used as an excuse not to run testing that would have revealed my autoimmune issues. This went on for a decade. Now I am sicker than a dog.

Fibro is not treated, but you are simply offered a tricyclic or pregabalin, (Lyrica) which some insurance won't pay for and then you get Neurontin. Fibro is being sold to the public, while in the medical community, it is a dismissive diagnosis, designed to keep you out of a specialists office, and in the family practice arena. Don't buy the commercials, or fancy adds in Arthritis Magazine.

I had Lyme Disease with an EM rash and was told I had Fibro. I had an ANA thru the roof and + Sjogren's biopsy and some buub told me I had Fibro. Fibro has no diagnostic criteria but 18 pressure points that hurt on every one because they are tendon insertions. What other medical disease do we diagnose by default? By a lack of findings? None. You can get Lyrica ordered for your neuropathy....same thing. A Fibro diagnosis won't get you anything you do not have access to now, other than a few raised eyebrows from docs who don't buy it. Big Pharma invents diseases....they want to sell lots of drugs. The DSM which defines psych disease has quintupled in size in 10 years. Is it because we have more psych disease....nope....everything is a disease now, to be treated with some antipsychotic like Abilify, Seroquel or some SSRI, like this year's new one, Pristique.

If you feel physically ill, pursue a diagnosis that is the result of clinical FINDINGS, not a lack of them. That is science. This is how a scientist looks at disease....we find things and classify them...not name a lack of findings.

I think a lot of really sick people are walking around diagnosed with Fibro, and it will take years for them to get a proper diagnosis.

Also, if you have neuropathy, that can cause all kinds of pain, not just burning. I have profound neuropathy and very, very little burning, but profound bone and muscle like pain. It all depends on what fibers are affected, and how you are hardwired.

Have you had a good rheumatological work up? It does not take a rheum to do this....an ANA and ENA is a start. You could also request an autonomic battery.

PN comes with many autoimmune diseases. I would keep an eye on your ANA.....and check out dysautonomia.

Dysautonomia is a real diagnosis, with clinical findings, among them pain and exhaustion. There is a clinical syndrome with Dysautonomia. It is caused by small fiber dysfunction or neuropathy.

Try to get fresh air, exercise and eat well...also examine any meds you are on....but, you know your body. If you don't feel well, persevere until you get answers.

This may be temporary, as you get more used to moving around.

If your muscles were not so sore before, and now you are more active, then they need to increase their metabolism to keep up.

If after a week or two you still have alot of pain, then you need to have the doctor help you with this...may be Fibro.

There are supplements to improve muscle function. One is acetyl carnitine. It increases burning fatty acids for energy, so the lactic acid build up is less. The lactic acid is what makes for the pain most of the time.
You can also try soaking in a bathtub with epsom salts, and that will help too. Use about 6-8 oz for a big tub, and don't use really HOT water...keep it lukewarm. Be careful getting out, as it gets slippery.

If you are low in B6, there might be muscle symptoms too. Pyridoxal is used by muscles for their metabolism.
Make sure you drink enough water during the day too.

I agree with MRSD as well, in that it could be temporary due to deconditioning. Deconditioning can occur in as little as two weeks. If you can get out to walk or get to the gym, and try light weights or swim, you may feel better. Do it consistently. Be gentle tho. If you don't feel better, trust yourself and talk to your doc, assertively and calmly.

Since you have neuropathy, likely idiopathic, you could be in a preclinical phase of whatever it is that is causing your neuropathy. It could take a while for a clinical picture to emerge.

Since you are young, if it is not a hereditary neuropathy, there is some cause, somewhere.....eventually it will likely emerge. Hang in there.

Hi there,
This muscle pain isn't actually a new symptom that I developed, it has consistently been with me since about 1-2 months since my first symptoms (i.e. tingling in both hands) started (back in February 2009). I have brought it up to my neurologist a while back who pretty much dismissed it as something I need to deal with because I have neuropathy, and I was wondering if there could be another reason for the muscle pain. So unfortunately, no, it's not something temporary .

MrsD ... thanks for your suggestions. I will try the epsom salts as soon as I can get my hands on some. I'm working on drinking more water ... I know I don't drink enough. I also know I'm low in B6, so am starting B6 injections this week. Really hope to notice some changes soon ... it is absolute hell living this way.

Cyclelops ... I kind of gave up hope on anyone ever finding a cause. Don't know if it's a good thing, but have no more strength left to be hopeful. And about the gym ... feel guilty even considering that for myself, when I can barely take care of my kids/housework, etc. without being out of the house any extra, but it might be something to try ... I know exercise has to be a good thing ...

Thanks everyone.

Miriam, there is an emotional process that goes on with diagnosis of a serious disease. I think it is even more profound when you are young. I was sick as a young woman but they never did the proper testing, so I had the luxury of thinking it was in my head....maybe that was good, maybe not.

Now that I have diagnosis, neuropathy and a reason for having it, things are not all that better....some, because they are trying to treat it with IVIg, but, then again, it isn't like things are hugely better. My alternatives are as toxic as the disease.

I feel some days, like, 'Is this it? Is this how I am going to feel the rest of my life?" "Man, I am getting ripped off'.

I guess what I am trying to say, is a disease, any disease comes with this sinking feeling that one is actually 'sick'. I have transitioned thru an unbelievable string of symptoms and often, many of them have passed. Some have not.

Just do the best you can. Do what you must to get by. Cut yourself some slack. Vent if you need to. Venting is good. Distract yourself as best you can.

I sometimes pretend I am well....this lands me in bed for a few days, but, if I can have the illusion of normalcy for even a few hours, it is worth it. Lately, I am so sick, that I can't even pretend not to be...it won't work.

Having a chronic disease, with young children to raise is indeed difficult, but I think you are a strong person....oh, and have them check that F-ANA and ENA at least twice a year, as well as other tests for thyroid, diabetes, and other things.

Also, it does not hurt to get a cardiac work up.