Presumed peroneal nerve problem, mainly one foot, leg, buttock.Pain/ weakness evolving over 3 years!
Posted , 9 users are following.
Does anyone suffer from anything similar? I feel so alone with this and have been suffering for over three years with various different diagnoses but no real understanding. Sheer determination has carried me through but has been, and still is mixed, with very low, hopeless times.
My symptoms
- Alternate days I have pain and some weakness over my inner foot and ankle, particularly my toes around and between the first and second toes. Then on the next day I have a weak outer foot and ankle. It can be pins and needles but essentially feels like the muscles aren't working in this part of the foot.Until very recently this day was always accompanied by gnawing buttock pain which could really start to make me have an overactive bladder. See below - My Attempts to be Pro-active to see what may have reduced the back pain significantly.
- So much weakness, pain or discomfort in my foot that I don't manage to walk for more than 10-20 minutes at a time. I used to be a hiker.
- Pain eases with rest (when I go to bed) but returns as soon as I begin to get on my feet.
- The other foot usually takes on a similar pain and weakness to the symptomatic one but not nearly even half as bad and this matches the nerve pattern for which ever of the 2 alternate days!
Professional diagnoses so far
- Arthritis in the problem foot
- L5 paracentral nerve protrusion which leans to problem side. Small focal protrusion at S1. Neither are operable but may cause chemical reaction. This MRI was about 9 months ago.
- 5 years ago I had a kidney removed by keyhole incision due to a cancer diagnosis...which turned out to be NOT cancer.The scar tissue is on my tummy near my hip...and I wonder about the connection.
My Attempts to be Pro-active
- I have been doing floor based Pilates aimed at core and back every day for about 30 minutes for several months now. It is tough and laborious but may be the reason my back pain has diminished.
- I try to do something active each day now even if my pain gets worse(It helps me sleep) such as about 40 mins cycling, Aqua aerobics, a 30 minute swim (which exhausts my legs) but walking and standing are very limited.
I often feel hopeless as changes are very slow and I wonder if they are actually improvements or just changes. Has anyone got any suggestions please? I fear giving up because I may lose the strength I have and have the return of back pain.....but I am weary with trying and really quite down about my situation.
0 likes, 24 replies
Peonygirl1 elaine_10691
Posted
hi elaine, i encourage you to see a neurologist and ask for a nerve conduction test. this test will indicate if you have compressed nerves and if there is damage to these nerves. the symptoms you are experiencing sound like what I have which is bulged disks that required a fusion operation. I have permanent nerve damage and chronic pain which affects my lifestyle everyday. its important for you to find out whats going on so that you can have the best possible outcome. to ignore your situation is to assure you will have even more issues as time goes forward. my best wishes are with you! Get going and fight for your well being!!
elaine_10691 Peonygirl1
Posted
Hi Peonygirl,
Seeing the GP tomorrow so will ask about the nerve conduction test. Thing is, I pass all the strength tests...pushing away with feet etc and come into the room seemingly walking fine. Everything gets worse with more weight bearing. So you had the fusion but you still have the nerve damage? Did the fusion help at all?
derek76 elaine_10691
Posted
" 5 years ago I had a kidney removed by keyhole incision due to a cancer diagnosis...which turned out to be NOT cancer. The scar tissue is on my tummy near my hip...and I wonder about the connection"
How did they do such a bad diagnosis ? What did the kidney show after removal ? Were you compensated for the unnecessary loss of your kidney ?
pippa58442 elaine_10691
Posted
Surgery can cause nerve damage. The kidney surgery could have affected your bladder since these organs are close to each other. Arthritis and nerve protrusion have shown on scans, so I would accept these as your diagnosis since it was a medically confirmed diagnosis and the scans you have had are highly accurate. Sometimes exercise can improve nerve pain but it can also worsen it. Do not do these exercises if it makes the pain worse; you could be causing further damage. 'Changes' could mean either improvements or a worsening of your symptoms. If you feel your back pain has got better, that could be a positive change/improvement. If your symptoms have worsened, that may mean a negative change/worsening of symptoms.'A change' can mean either of these two scenarios.
Neuropathy can cause muscle weakness, pain and pins and needles. I have all these symptoms with my neuropathy in both my hands and arms. The nerve conduction problem can pass from from one arm to another. Apart from nerve drugs which are highly toxic, there is little to be done if you have nerve problems.
elaine_10691 pippa58442
Posted
Hi Pippa,
I'm confident my bladder isn't damaged. It is the nerves from the back which cause the irritation. Yes, I don't know what to do about exercise...how much is too much, how much is helpful. Two things though - the exercise helps my mood and helps me sleep better and apart from the weakness, tingling pain in foot, leg, back I am somehow stronger and fitter. I am choosing to continue but pace myself as I fear a downhill turn the muscles |I do have if i don't.
pippa58442 elaine_10691
Posted
I can't do vigorous exercise because I don't have the muscle strength and the little I had was reduced further by the neuralgia. Exercising the areas sets off the pain and there is also the danger of aggravating my back injury. The most I can do is walking and gentle swimming. You're lucky to be able to do strenuous exercise. For me, my muscle strength hasn't got worse with limiting exercise; it seems to keep my neuralgia at bay The only other thing that worsens it, is cold, damp weather.
elaine_10691 pippa58442
Posted
I'm sorry to hear about your pain Pippa,
But you sound as though you have worked out your own best strategies. That is all we can do I suppose.
pippa58442 elaine_10691
Posted
For some reason natural solutions seem to work.
donald12062 elaine_10691
Posted
I feel your pain Elaine !
I've had peripheral neuropathic pain for over 7 years now !
I've tried all the med's but no real pain relief !
I have the pins and needles which feel more like nails stabbing me in my feet and toes !
On Nov. the 4th,I have an appt. with a vasculor doctor because my primary doctor thinks that my feet and toes aren't getting enough blood flow to them !
My primary doctor told me that I might have to live with this pain !!
I sure pray that I don't !!
Hang in there !!
derek76 donald12062
Posted
Were you ever prescribed Cipro or Fluoroquinolone antibiotics prior to the start of your neuropathy ? Even a long time before as often the effect is delayed or triggered by a later medication.
elaine_10691 derek76
Posted
Hi Derek,
No antibiotics or meds prior to neuropathy. My kidney tumour, seen on scan, suggested 98% cancer. I have (previously unknown to me) small benign "tumours throughout both kidneys called angiomyolipomas which don't affect anything so they weren't bothered about them. After kidney removed they called the tumour an oncocytoma (non cancerous) but a kind urologist I now see has accidentally(on purpose?) called the tumour it an angiomyolipma. Yes, I was in shock...but I googled all info about kidney tumours including US stuff. It seems they have no way to detect the difference. If you try to do a biopsy on cancer in a kidney which has cancer you risk spread or if the results come back no cancer that doesn't guarantee the rest of the tumour is cancer free. I also felt, and still feel, in spite of my grief, that there is no point in suing the very people from whom you need your future care. You have to seek compensation within a given timescale. I was, at the time, too traumatised and accepted some psychological help( which is temporary really)....but what does compensatory money do anyway? I don't think you can buy health, the very thing which is most precious to me.
elaine_10691 donald12062
Posted
Hi Donald,
I too get very cold feet. I think my blood doesn't flow there easily unless I exercise. I might mention that to the GP.
We must try not to give up. Try to do what you can to encourage blood flow if one is able, that is- any physical activity counts. If lack of blood flow makes for pain we have to improve it a little.
derek76 elaine_10691
Posted
My mother was a very fit and active 82 year old when she had a cancerous kidney tumour removed. She did have symptoms that she had gone to her doctor about. The operation was successful but the anaesthetic affected her brain almost as though she had Alzheimer's. She had postponed the operation for six weeks as she was going to Canada traveling around on her own visiting relatives. She was going to tell us of her adventures when we went to Scotland to look after her after the operation. We never did hear it. Hospital denied that the anaesthetic could have caused it and we eventually had to put her into a retirement home. Apart from her memory she was fine and the only one there not on any medications and she lived to 92.
elaine_10691 derek76
Posted
Sorry to hear that about your Mum Derek,
Dementia is like an early death. Each anaesthetic my elderly mother of 87 years gets seems to render her confusion a little worse. I think is is partly to do with the aging brain. No consolation though when she is fine before the op, then clearly isn't afterwards. The medical profession are a tight knit community who cover each other's backs. I don't deny it is a stressful job...but they do choose it.
derek76 elaine_10691
Posted
I'm hoping to even better her age wise as I'm now 85 and seemingly still have most of my marbles .... If only I had not been prescribed Cipro/Fluoroquinolones I would still be walking around the South Downs and going to the races.
When I used to go to see her I was never sure if she would know it was me as sometimes I was her brother or my father.
derek76 elaine_10691
Posted
I've had four anaesthetics since 2004. I was concerned at the first one after what had happened to my mother. I explained this to the Anaesthetist but after he did an ECG he was concerned more concerned about killing me until I had an echocardiogram that reassured him 😃
That operation took about two hours and my later ones 5 1/2, 3 1/2 and an hour and I was wide awake and alert after them and testing my memory. Some other patients in the recovery room or intensive care did have initial problems as seems quite common.
donald12062 derek76
Posted
No I wasn't prescribed these antibiotics before the onset of peripheral neuropathy !
I've had 7 back surgeries and my neuropathy came on 7 years later after my 7th back surgery !
I had a doctor tell me years ago that the scar tissue in my incision was the cause of my neuropathy pain in my feet and toes !
I'm taking Horizant 900 mg a day and it is helping just a little !
Now, my primary doctor thinks that my feet aren't getting enough blood flow to them, so I have an appointment with a vascular doctor where I'll get some testing for that !
If the tests come back negative, i'm afraid that i've exhausted all the possibilities to get help to relieve my pain and I'll have to live with it !