Nerve pain in both legs and feet, back pain. Anybody recognise?

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laurajane
New Member


Date Joined Feb 2012
Total Posts : 4
   Posted 2/26/2012 7:43 AM (GMT -6)   
Hi, This is my first posting.
I am a 66year old female, with long standing back and leg pain. Have had a laminectomy in 83, a spinal fusion in 84.
My leg pain has been getting worse in the last 12 months, now have numbness in both outer thighs form the groin to the knees, and lower legs from knees down severe burning pain, and tingling, also under feet and around ankles. about 8 yrs ago, i was sent from Dr to Dr, had MRI CT'c didn't show anything. Had so many epidurals nerve blocks etc, nothing has helped. I now face a total knee joint replacement, in my right knee and after that an arthroscopy in my left knee. I am terrified this (all the pressure on my back using crutches, and be moved around under anaesthetic) is going to make my back worse. I am constantly on the edge of severe leg and back pain--why can't it be diagnosed?
I live in the north of England, and have found there is a walk in mri scanner in London, surely if my pain ALWAYS gets worse when I am upright, a lying down mri or ct scan will not pick up whatever is causing this horrendous pain, day in day out. I can't stand sit or walk without terrible pain,mainly in my legs. If it was a disease process, it would be there when I was lying down, that's the only time I get any relief.
PLEASE, is there anyone out there who has similar symptoms, or anyone who can help. I know my symptoms inside out, but it's impossible for a Dr to know when they look at me, the pain inside is crucifying me.
The only way to describe this is it's like someone holding my legs in boiling water, and I'm screaming inside!

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 2/26/2012 12:06 PM (GMT -6)   
Hello, I am Kathy/nini53, I am certainly not a doctor, but have you had a test to see if you have neuropathy?  If not you might ask you doctor about this test, let me warn you though its painful if not done with something to at least relax you, which my doctor, excuse me my old doctor did not do when she gave me the test.
 
Take care and good luck,
Kathy
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

laurajane
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Date Joined Feb 2012
Total Posts : 4
   Posted 2/26/2012 1:45 PM (GMT -6)   
Hi, Kathy, thankyou for your reply. i had a nerve conduction test several years ago, the one where they put an electrical charge into your legs via a needle, and this brought up damage to my sciatic nerve, I took lyrica, which worked for a while but I was so spaced out, and had to keep upping the dose, which made me put more weight on, ans I decided I would rather have a clear head, and live with the pain, but now I'm not too sure. I also had a spinal stimulater attempt made, but the wrong level was being stimulated, and they had to take it out. you seem to have many of the same problems, have you found anything works? I'm so fed up of all the pain, and you can't moan for thirty years, it's just not fair on family, it's not their fault, I wish there was an answer.
Also been diagnosed with fibromyalgia, sometimes I wonder if that's a get out, when they don't have a clue?

cogito
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Date Joined Oct 2010
Total Posts : 932
   Posted 2/26/2012 1:57 PM (GMT -6)   
If it is bilateral -- present in both legs, then a lower lumbar or sacral disk seems the most likely cause. In addition to an MRI, perhaps seeing a well trained physical therapist or other medical practitioner who can try to diagnose you through movement and position?

Another possibility that comes to mind is poor circulation in your legs. An MD can check the strength of your pulse in your ankles.

Also, have a look at this nerve chart and consider whether the pain patter follows a specific disk level:

www.backpain-guide.com/Chapter_Fig_folders/Ch06_Path_Folder/4Radiculopathy.html
C4-T4 Scoliosis (disk degeneration, stenosis, narrowed neuroforamen, bone spurs), RT hip and SI joint damage from car accident. Also, pectus excavatum, supraventricular tacycardia and mitral valve prolapse syndrome.
Current meds: Ultram ER 300mg daily, breakthrough - hydrocodone 10-15mg, or oxycodone 5-7.5mg. .25-.5mg ativan as needed for sleep, Verapamil 240mg SR (for tachycardia). [/gray

straydog
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Date Joined Feb 2003
Total Posts : 16423
   Posted 2/26/2012 2:15 PM (GMT -6)   
Hi LauraJane and welcome to the chronic pain forum. I am sorry that you have to be here but glad that you found us. From what you are describing with this pain it sounds very much like you have some nerves involved, plus you mentioned Lyrica helped some. Sometimes with pinched or compressed nerves the worst pain can happen in certain positions or making the wrong move. Some people take Neurotin, or Cymbalta for nerve pain and get relief. I am assuming you had a EMG and just because it was normal does not mean you don't have a problem. EMG's are not the most reliable test so I would not worry much about that. Perhaps you can talk to your dr about trying you on one of the other meds for nerve pain.

Anyway, I wanted to pop on and tell you welcome aboard. Take care...Susie
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NiNi53
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Date Joined Mar 2011
Total Posts : 816
   Posted 2/26/2012 7:40 PM (GMT -6)   
LauraJane, its true we have alot of things in common, I actually have a neurostim installed in my lower right back, with leads that are (at least thats what they told m) the leads would go down my back and legs.
As it stands now its been in almost 3 years now and has never worked.  The doctor installed it to deeply and it couldnt reach to charge, after a 2nd surgery about 2 months later it still didnt work due to alot of scar tissue, so here I sit with this thing in my back, I have to carry a card around me if I get on a plane, go in a government office, etc.
 
Its a big pain, but my doctor wont remove it yet, I am not sure why, but think hard before doing this, I also had that nerve conduction test, which was unbelievalbly painful, and the doctor who did it at the time would not give me so much as a valium.  That is one of the reason's she and her husband are not my doctors anymore.
 
Good luck to you, and please take care,
Kathy
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 2/26/2012 8:21 PM (GMT -6)   
Hi LauraJane (and how funny... I'm a Laura Jane as well...) and welcome.

You've described part of my own problem almost perfectly. My pain issues are quite complex, but I had some bad falls last year - fractured multiple thoracic vertebrae and did 'something' to my lower back. A couple of days later I started getting pain in my thighs and knees, and worked out very quickly that it was made much worse by sitting - a real issue for me because I use a wheelchair a lot of the time. The leg pain has now spread - tracks from my lumbar spine, hips, groin, knees, outer calves, feet. I had CT scans (I can't have MRI) that have shown I have disc bulges in my lumbar spine at L3/L4, L4/L5, and L5/S1, but that the bulges aren't compressing anything. No stenosis, no cord compression, no nerve root impingement. No explanation for the leg pain, but the distribution of the leg pain (at least in my case) is consistent with an issue around L4/L5. We just don't know.

I've not been able to find much to help mine, but I hope you have better luck - both with explanation and management.

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

MysterySolved
New Member


Date Joined Jan 2012
Total Posts : 1
   Posted 2/27/2012 1:21 PM (GMT -6)   
Hi everyone:   this is my first post.  I am 51 years old and live in British Columbia.  I have been in pain everyday now for almost 6 years; when I was 46 I was walking a dog and he pulled me so hard my neck did a exorcist twist and I ended up with bilateral herniated discs in my neck which never healed properly on the right side.  I have wicked muscle spasms in my neck where you can actually feel the muscles bunching up.  Anyway it really is painful and I have accepted that I will live with this pain for the rest of my life.  However, this is not much of a concern now because I am now in unbearable pain due to a herniated disc at L5/S1. 
 
I exercise now by doing abdominal crunches and leg up and down exercises. I weigh 115 pounds and am about 5feet 4inches tall.
 
I just got back from the orthopedic surgeon who took all of 10 minutes to tell me that we will proceed with:  1. cortisone injection at sight on March 19.  2.  Physio.  I said no I can not afford it. (this is not happening because I am on disability and physio is not covered plus I really do not believe it would help and may actually make my pain worse and I will not risk this.  3.  Lyrica (I am already on Gaba for last two years but have weaned myself off because it gave me tremendous hot flashes and made me so dizzy I could not stand it). He dismissed me very quickly so I did not get to say very much.  He did tell me this was the standard procedure before considering an operation.
 
I told him I really wanted the operation where they go in and basically vacuum up the disc materail that is sitting/compressing my S1 nerve.  It is just killing me.  The pain runs down the outside and inside of entire right leg, into ankle, foot and toes.  I have pins/needles/numbness/heavy foot feeling.
The pain is throbbing, always there.  I barely drive anymore, I have lost my stride/gait and now limp.  I can not walk my dog etc...
 
During the day I take; 20 mg of long lasting oxycontin; 15 mg percocet; 1or 2 muscle relaxers; weaned myself down to 600 mg gaba;  150 mg of arthrote and at night; I take 1 zopiclone, 1 10mg oxycontin,  3 ativan, 1.5 mg clonazepam and the pain still wakes me up. 
 
Has anybody had the cortisone injection in this area of the back and had it worked?  What was your experince with the cortisone injection(s)?  I would be very grateful if someone could offer their experience(s). 
 
I am praying that it will work because here in B.C. you have no say as to what you want done as far as your treatment plan goes.  It is the Dr. that makes all your decisions for you.  I wanted the operation asap because I am afraid that waiting this long (1 year so far since I fell hard on butt on ice) has made my herniated disk worse than it was 6 months ago and I do not want my nerves to become so damaged that I will not heal properly.  This already has happened to my right side of neck.  It is much worse since January 7 2012 when I lost ability to walk and now limp. The pain is also much more terrible than ever before.
 
Thanks for helping!
 
J. Diana
 
J.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16423
   Posted 2/27/2012 3:40 PM (GMT -6)   
Hi Diana and welcome to the chronic pain forum. I am sorry that you have to be here but glad that you found us. You asked about the steroid injection and my question is the dr talking about doing just one injection or what. Some times the drs will do epidural steroid injections which are done in a series of three injections spread out a few weeks apart. The thing about injections is they do not cure the problem, they hope the medication will calm down the inflammation and pain that is going on. Some times these work and some times they don't. No one can say whether or not these will help you, not even the dr.

Its a shame that you are unable to do any physio because it can be very beneficial to a person. If you end up having surgery you will in all probability need to do some to help strengthen your muscles. It takes very little use to weaken every thing in a short amount of time.

Here in the states the drs will not do surgery on someone immediately unless there is a chance of paralysis without having the surgery. They will treat conservatively as your dr is recommending before doing any surgery. Even when you have surgery there is no guarantee the pain will go away although that is the goal.

It is true that nerves can get worse if too much time has gone by, depending on how bad the nerves are being pinched or compressed. The nerves have to heal on their own. There again, only time will tell on how much they will heal.

Also, if you don't mind please start your own intro thread here so the other members will see it and be able to give you a proper hello and welcome aboard. Thanks.

Anyway, I wanted to pop on and tell you welcome aboard. Please keep us posted on how you are doing.
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Post Edited (straydog) : 2/27/2012 1:44:05 PM (GMT-7)


laurajane
New Member


Date Joined Feb 2012
Total Posts : 4
   Posted 2/27/2012 6:29 PM (GMT -6)   
Hi Laura Jane,
I heard of an upright MRI scanner in London and rang them today, I had seen them online, and the theory is that problems that are made worse by sitting and standing, walking-or limping in our cases! cannot easily be diagnosed by lying down in a scanner, because the pressure due to gravity is not there, so patients who have herniated discs which may be causing tremendous pain are not being diagnosed--I would think most people with back pain get some relief lying down. I have booked an appointment with the surgeon who is going to do my knees, to ask if he will refer me for an upright scan. Is it possible that there may be a way of doing an upright ct scan for you-I hope so, it's no life living day in day out with horrendous pain, and the thought that it may never go.
Hi Cogita and Kathy will put myself back on Lyrica, and feel like a zombie, or go mad with the pain. and Kathy, I'm beginning to be quite happy the spinal stimulator didn't work and it was taken out so quickly after hearing about your problems.
J Diana, don't rush into surgery, it can make you worse, just be sure that the surgeon can see what the problem is exactly, and isn't going in blind, so to speak. I had my spine fused, and it was the wrong level, I've regretted it ever since!
Take care everyone.
Laurajane

Darnme2000
Regular Member


Date Joined Feb 2012
Total Posts : 88
   Posted 2/27/2012 7:11 PM (GMT -6)   
To both Laura Janes. I have had a lot of the symptoms described by the both of you. My doctors had difficulty determining the source of my problems. It wasn't until my doctor finally ordered a Myelogram that he could definitely confirm my L4-L5 Disc bulging and putting pressure on the spinal cord. Briefly, the Myelogram consist of you laying on a tilting table and the doctor injecting dye into the fluid filled space of the spinal canal. Using a Flouroscope he can see the dye and your spinal column. he tilts the table and watches the dye move. If a bulge is present you can see a reducing of the dye flow in that area. I was awake during the process and the Dr. performing the test pointed the restricted flow and bulging disc to me on a Monitor I was able to see. It was actually pretty obvious when I looked at it.

My L4-L5 surgery helped to reduce some of my symptoms but did not get totally rid of them. However I have a friend that had the same surgery just this last week and he is pain free now and some of his symptoms were the same as what you have described.

I can't relate to the 'Boiling Water' feeling though or maybe I just interpret it differently.
You don't stop laughing when you grow old
You grow old when you stop laughing !!!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16423
   Posted 2/28/2012 1:18 PM (GMT -6)   
Hi LauraJane, do you have the medication Neurotin available where you live? You may want to ask your dr about it. It works like the Lyrica but without some of the side effects Lyrica causes. Here in the states its used for some of the same problems as Lyrica.

You mentioned people with bad backs laying on their back, that is about one of the worst things we can do is to lay flat on our backs. It puts too much pressure on things, laying on your side with a pillow tucked between the knees is the best position for sleeping, it takes the pressure off of the back.

The upright MRI Scan sounds really promising because it is very hard to lay still that long when you have a bad back problem. Most of us come out of the scanner in a lot of pain.

When is your appt with the knee surgeon? Keep us posted.
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laurajane
New Member


Date Joined Feb 2012
Total Posts : 4
   Posted 2/28/2012 2:20 PM (GMT -6)   
Hi Darn Me, Yes I had a myelogram in '82 and the Dr doing it caused a dural tear, which gave me the most terrible head and neck pain. I was kept in hospital, not able to raise my head for 10 days, and all it showed was some narrowing, I had a laminectomy, to make the space in the laminae wider, but didn't help.
Straydog, when I said lying on my back, it was when I was referring to a standard MRI, and yes, I almost fell out of the scanner, the pain was so bad. I do sleep on my side with a pillow between my knees, also lie on my side during the day, when I can't sit down for long. My knee's are so bad, that I have no option but to have a replacement, but I am concerned about the extra pressure put on my back, using crutches for a few weeks. That's why I'm trying to get referred for an upright MRI. My appointment with the knee surgeon is two weeks yesterday, I just hope he doesn't refer me back to a spinal surgeon first, sometimes consultants don't give us patients enough credit for knowing what is going on with our bodies. Just think this is probably my last chance to get a solution-hope so!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16423
   Posted 2/28/2012 7:00 PM (GMT -6)   
Hi LauraJane are you having both knees done at the same time or one? And I wonder if you would do better with a walker over crutches. Crutches are so hard to walk on. I have had multiple knee surgeries and always hated being on them because of being afraid I would fall on the crazy things. I sure hope things go well with the knee dr.

Take care.
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zirconia
Regular Member


Date Joined Feb 2012
Total Posts : 29
   Posted 2/28/2012 11:10 PM (GMT -6)   
Laurajane, wow, I have chronic pain due to spinal disease (degenerative disc disease), arthritis, and polyneuropathy likely secondary to the spinal disease as well. I have 8 herniations spanning my cervical, thoracic, and lumbar vertebrae. I have had 3 epidurals since November, and am having a second thoracic one this Friday, as well as three trigger point shots in my left cervical area with lower dosages of steroids than I will receive from the epidural. Anaesthesiologists can be very different, ranging from very liberal to very conservative. The one I am seeing in this small town is quite conservative compared to the one I saw previously in a large city.

I think there have been some excellent posts for you to consider in your search for relief. I have been fortunate in that my pain has been much more well managed between lifestyle changes (not lifting things), to some physical therapy, to some epidurals and other steroidal shots, to some Vicodin (which I try to limit to as little as possible since I have constipation issues), to hot and cold packs, to sitting on chairs with lumbar support padding, to NOT sitting on metal chairs with no support, to taking a medication for sleep (in my case Seroquel since I am also a psychiatric patient with insomnia issues for two decades at least), to living in as quiet an environment as I can (which is not always easy).

I wish you the very best and send you blessings as you find relief from your pain.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3696
   Posted 3/2/2012 12:38 PM (GMT -6)   
Hi laurajane Welcome to the Healing Well Chronic Pain forum, Sorry that you have reasons to come here, but glad that you found us anyway! I think you will find really caring and compassionate support here anyway. People that can, if nothing else, can empathize with you and understand what your going through, and listen to you and give you support!.
 
 I have been having lots of pain in my inner and upper thighs, going from my groin and waist area down to my knees with a majority of my pain being in the upper thighs, with allot of spasms, and more on my right side than my left. I have had an MRI this past January, and just this past Tuesday I have gotten my second of three epidural steroid injections at L-3. I have also seen a neurosurgeon, and I have been told that the thinks I need surgery to open up the foramen at L-3. He told me he would call me after he done a more thorough review of my MRI. Well  his nurse just called me the day before yesterday and after his  review  he  now wants to do a Foraminotomy at L-3 and L-4 with a far lateral diskectomy. They scheduled me to  see him again the 30th of Mar for him to further explain what he wants to do and why and then I can decide what I want to do. In the mean time I am going to get a second opinion down in Kentucky where my sister lives. As I am thinking if I do need surgery I might have it done down there, where I will not have to go through it alone.  Anyway the reason I am telling you this is for me, the surgeon has told me that the pain in my upper thigh is caused by the nerve root at L3 being compressed because of the narrowing of the foramen at L3. But again he also told me my entire lumbar area is a total mess and he was only going to go in and fix the very worst parts.

It does sound to me that you definitely need that MRI, and also remember, just because you have had and MRI once, your body changes all the time and even though it did not show anything significant then does not mean that you do not have something major wrong with you now. I know they told me that the narrowing of the foramen at L-3 has gotten much worse than what it was just a little over a year ago when I had an MRI done of the same area!

I do hope you can find out what is going on, and they can find away to relieve your pain! Good Luck to You!

White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

Post Edited (White Beard) : 3/2/2012 10:45:33 AM (GMT-7)


Brazen
New Member


Date Joined Mar 2012
Total Posts : 2
   Posted 3/4/2012 1:51 AM (GMT -6)   
Hi Laura Jane:

I know exactly what you're feeling and went to several Dr's and no one could diagnose my condition, finally I was referred to Mayo Clinic. I thought it'd be another wasted trip to a doctor, but I was wrong.

First let me say I'm not a doctor and I'm not giving any medical advice.

After spending the day at Mayo Clinic and seeing several specialist, it was determined that I had a condition of (RSD) Reflex Sympathetic Dystrophy also known as (CRPS) Chronic Regional Pain Syndrome. Basically it's your nerve endings sending signals to the brain that you're in serious pain.

Most people develop this condition after having a traumatic injury requiring surgery, but it's been known to develop with a simple sprain.

Backstory: I was 17 years old when I injured myself playing basketball. The injury was quite severe. I had a compound fracture at the knee, breaking my growth plates. The injury required a metal plate and several screws to repair the knee. I also lost all the cartilage under and around the knee (torn meniscus). To put it into perspective it'd be the same as if your knee was a tire on a car and it instantly went flat, and the cartilage being your shocks and suspension system. The tire / knee was able to be repaired but the cartilage / shocks are metal to metal or in my case bone on bone.

All told I ended up having 5 knee surgeries and over time the nerve endings were permenantly damaged. Hence the RSD.

I had a Spinal cord Stimulator (SCS) implanted and it's helped tremendously. When I was considering the process they let me test drive the SCS and only after I could tell it was going to be a success, they implanted the SCS permanently. Now at age 35 I'm still plagued with pain, but nothing to the degree that I was prior SCS surgery.

I hope this helps you if not gives you some education on what it could possibly be.


Rest Easy,
Brazen

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 3/4/2012 7:28 PM (GMT -6)   
Hi Brazen, and welcome here. I'm sorry to see another dealing with CRPS - I'm 27 and I've had it nearly 13 years now, with full body involvement and intractable pain. I'm glad to hear that you've had good results with the SCS.

As you're new here, it would be great if you could start a new topic to introduce yourself, just so that everyone can welcome you properly.

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump
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