Neuropathy help Dr Appt.

[hopefull1]

I have been having trouble with my left hand(peripheral neuropathy) for about 7 or 8 months now . For about 3 months I couldn't use my left hand it is still numb but I can use it. The problem now is my feet,legs,right hand and at times my chest and head are doing the same thing the symptoms come and go.

I went to the Dr today ,I asked how long was this going to last??? He said he was unsure,I am on Lyrica and Neurotin to help with the pain along with pain meds.He upped the lyrica to 600 mg 3 times a day and percocet every 4 hours. I can't stay on this stuff all the time I feel it is to much. But at the sametime the pain is more than I can handle.

He belives it is due to active lupus other test have been done with them all being negative and lupus being active.I am going to see the rummy next week . If anyone has had to deal with this PLEASE tell me what has been done that helps. Is there anything I can do that will help ???

I can hardley walk at times due to the pain and my feet being numb. I have taken all my meds tonight it is 1am and I can't sleep because I hurt It is too soon to take more pain meds.:worried:
Thanks for your help
Pam

[fly-by]

Hey Pam:wavesmile:

It's been a while. Glad to see you. Sorry you are having such a rough time though. There certainly isn't anything like neuropathic pain!

Has your doctor done any testing....nerve conduction studies, EMG's....to find the source of the neuropathies?

I don't know about lyrica, but one of neurontin's main side effects is peripheral neuropathy....did the numbness start getting worse after you started taking it?

I hope they find something to help you out soon.

Take care. Big hugs

[Raglet]

I have numb feet, personally i find the best way to walk on them is to ignore the fact that they are numb and just do it anyway. Ditto with driving, I can drive perfectly well until I think about the fact that I can't feel my feet on the pedals, then my mind does a number and it gets tricky. So I have learnt that it is best to just not think about the numbness and get on with it, if you know what i mean. It seems to work for me.

Pain is more tricky as it can't be ignored away - when my peripheral neuropathy was very painful I used a combination of pain meds, cold packs and staying busy to deal with it. If the pain is really getting you down ask for a referral to a pain clinic

hth

raglet

[Lily]

Hi Pam,

Who knows about this stuff :sad: It seems some of us are stuck with it, I suffer the same problems, but am getting resigned to them as Raglet mentioned, not good but what choice do we have :rolleyes:

For me I am on an anti-seizure drug for the pain and I saw my Doc yesterday and he doubled the dose. Hopefully thats going to stop me having great stretches of time where I am laid up from the pain at least. But as far as curing it then if anyone has a cure then pls let us all know :) ;)
He did mention he has a couple of other things up his sleeve if that fails, so we will see. My problems are multi-pronged, the peripheral neuropathy + increasing tremors and spasticity. We try and help one thing at a time. I try and forget about most things but thats not always possible, but I'm working on it.

As you say it comes and goes, that the important thing. Granted when it comes its bad, but the fact its going means that its not causing great permanent damage, and I'm grateful for that.

(((((((((((((Pam))))))))))))))))

love
Lily

[PattiWho]

I was diagnosed with Peripheral Neuropathy in 2004 in my left foot. I went months with only wearing shoes when absolutely necesary due to the pain (before telling the doctor due to taking care of my ill father). My rheumy sent me to a neurologist which preformed tests, diagnosed me and put me on neurontin. He said the Arava I was taking was the cause of it. Well the rheumy didn't agree so I was kind of stuck in the middle. I went off the Arava and the pain went away but left me with numbness on the outer side of my foot. About 3 months ago I started getting a vibration in the foot. I was diagnosed with Lupus only 9 months ago but had symptoms for a while so I am not sure if the 2 would be related.

[MILLMILL81]

Hi:hehe:
I also have Neuoropathy on my left foot and started to get on my hands due to Lupus

mill:hehe:

[Okie]

Hi Pam
I too was diagnosed with neuropathy about a year ago. The neurologist did several nerve tests to confirm the diagnosis.
He explained that the cause of my neuropathy in my legs & feet is due to 3 possible reasons
1--diabetes--which I don't have
2--chemotherapy--stage 3 breast cancer 5 years ago(yeah!!,I'm over the 5 year hump!) I had very strong chemo for 6 months & am presently on medication (letrozole). My oncologist has ruled out that this is the cause of my neuropathy.
3---effects of lupus
I was given Lyrica for the pain. My problem was the soles of my feet and my lower legs. Very painful to walk. It got worse as the day wore on.
Now, the good news is that after a year,I have no pain and am walking fine again. I see the neurologist this month & will tell him. I have had many meds and am beginning to think that they may be the problem. Although my oncologist says that the neuropathy is not from the cancer meds,I seem alot better since I have been switched to another medicine just 2 months ago.
I hope you get some answers because if they get to the source of it, chances are they can alleviate the pain.
Take Care & don't get too discouraged! I do believe there are better days ahead. Stay informed and continue being the squeaky wheel until you get oiled!! Hope you get some answers very soon!
Regards
Shirley(Oklahomadays)

[hopefull1]

Thanks for your replys !
Today was a better day I was able to work in my yard . I don't have to think and I love working in the flower beds. I can't sleep but I only have a little pain ,so that is ok. I feel good because I could do what I love to do today.

(Fly-by )-yes my Dr has done the nerve conduction,EMG ,MRI and checked for diabetes. They were neg all but the nerve conduction. The Dr is worried that there is long term damage already in the left arm (from my elbow down to my fingers) has been numb or tingling burn pain.When they did the nerve conduction on my hand they had to turn it to the highest setting before my hand would respond . If you know of anything else please let me know . ((((HUGS)))) to you


I am trying to find anything that they can test to find out what it is ,instead of just treatting the symptoms. The neurologist has been working with my lupus Dr to try to find out the main cause .I stared having focal seizures about the time this all started. They belive at this point it is from active lupus and the nerves system is involved. The other thing that they have been checking is active vasculitis has caused damage to the Peripheral neves system. ( Not sure how to explian )

I am taking 3600mg a day of the neurotin and 1800 mg of the lyrica plus taking pain meds on top of it . Someday I can do with taking over the counter pain meds .Then there are days that nothing works ,the pain is so bad I can't stand even my clothes to touch my skin . I am tired of taking all the meds :(

My sister was here from Fla when I went to the Neurologist with me on Friday . When he was trying to explin things to me she kept trying to tell him about all her surgeries for her broken back 10 years ago.:eek: I will never let her go with me again.

I need to record what he says because I can't remeber what he said . I know he said something about test this week and they would call me on Monday to tell me when . So I will find out then what kind of test LOL is all I can do .

I will let you all know if we find out .
Thank you all ((((((HUGS))))))

[Lily]

Hi Pam,

They were neg all but the nerve conduction. The Dr is worried that there is long term damage already in the left arm (from my elbow down to my fingers) has been numb or tingling burn pain.When they did the nerve conduction on my hand they had to turn it to the highest setting before my hand would respond .

What you have stated above + the fact that you are already on a boat load of stuff to stop the pain means its time for them to look at your Lupus meds :mad: As you say Pam, its about time they started treating the cause not the symptoms!

What other meds are you on?

((((((((((((Pam)))))))))

love
Lily