My name is Donna and I'm 51 years old. About 3 years ago I began to have trouble with both my legs. The symptoms have worsened over the years, however I do have periods of respite. The symptoms that I have mainly seem to happen when I'm sitting or lying down. I immediately get mild pins and needles in both feet, sometimes they go up my legs too. I sometimes get a heavy, aching in both legs or sore ankles and also a weird tight feeling, almost like my legs are swollen too. These sensations are often relieved when I get up and walk around, however, over the years I have become a little unsteady with my first few steps. On really bad days it affects how I walk as my legs feel like I have walked for miles and feel heavy and achy. I have visited my doctors on many occasions and he has sent me for many tests. All blood tests come back normal, I've had an MRI on my spine and my brain, both normal and nerve conduction tests on both legs which were also normal. I've seen a physiotherapist and an osteopath which did help ease the symptoms for a while. I have seen a neurologist who suspects idiopathic neuropathy. I did have a rather bad fall about 5 years ago where I landed heavily on my coccyx. Do my symptoms ring any bells with anyone please?
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Hi this seems very familiar to me. I have Perifeal Nueropathy,I to have had all tests done.
My symptoms began in a very similar way and being an active person didn't really take much notice at first. When I began to be aware that my right leg wasn't following my instructions for my dancing,that's when I knew something was going on.The rest as they say is history. I will add I have a very understanding Nuero doc and have had treatment from him in the form of infusions.
I hope I have been some help. I am over 70 so age is playing a part in this now.
Hi , yes oh my goodness, all of the above, the heaviness is as if I'm wearing metal callipers and then my legs get a really cold sensation!
The pain feels like I've run a marathon too! I'm used to walking 6- 8 thousand steps a day but really struggling with that at the moment, it seems to be getting worse quite quickly !
Sometimes I really freak out as they feel so weak that they won't hold me up ! My MRI was normal but it did show a lot of wear and tear on lower discs which seems to add to the pain ! Lot of pain in the back of calves too but my Doppler was normal!
Hopefully seeing a Neuro soon but I don't know if anything can be done !
I understand how you feel , it's rotten isn't it !
Hi, yes it certainly is rotten, but it is reassuring to learn that I'm not the only one. How do you manage the pain? Mine is more uncomfortable than painful but sometimes not really gets me down. I'm hoping to see a neurologist again, just need to persuade my doctor who thinks physio is the answer!
At the moment I'm not doing well managing it , this morning I went on a long walk and tried to be positive, but now this afternoon spent it in bed , mostly googling diseases and getting myself in a muck sweat about it!
I just wish I knew exactly why I was in so much pain in the legs , grrrh , I'm seeing my GP next week no doubt more bloods ! Will keep you posted !
My first blood tests showed a deficiency in vitamin D and for a while my symptoms went away. Another blood test showed low folic acid levels, so I now take that too. I have a very active job, but I find that if I've had a really busy day involving lots of walking that my legs seem to be much worse. I'm sat down now whilst typing this and both my feet are tingling and my legs are beginning to ache. The neurologist that I saw told me that sometimes they never find the cause or reason. Please keep me posted on how you get on and I will do the same.
Thank you Dontie, I will do , it's good to swap notes , we seem to have good days and bad days , today started well but turned later ! All my blood tests were normal but I was diagnosed with Hughes disease earlier this year after suffering more weird symptoms, in my case I think mine related somehow! I do seem to be collecting a lot of 'ologists' at the moment!
Good morning, I was just wondering, when your legs are at their worse, do you get extremely tired during the day, especially in the afternoon? I have days where I feel utterly exhausted. I have read that this can be a symptom of neuropathy.
Good morning, yes absolutely, yesterday was one of those days , I felt wiped out after a gentle stroll and a trip to the supermarket! Also felt headachey and to be honest a bit scared! Last night not sure I slept well as feel tired even on waking .All the muscles need my legs hurt and they feel like lead . How are you feeling today ?
I'm feeling pretty good so far. I slept reasonably well for the first time in a while and it's my day off work. I just have the usual pins and needles and I'm a little stiff. Sorry to hear your having a bad start to the day. Take care 🙂
Same here really , do you get any weird sensations in your fingers sometimes it feels like I have got superglue stuck on the tip or a splinter in there ?
Not as such, but I do sometimes wake up and my left shoulder aches like mad, my arm feels heavy and my fingers are tingling. This normally wears of as the morning progresses. Before your symptoms became a problem, did you get intense itching in your calves?
Mmmh not itching although I do now on my hands! The pains I got in my calves were tightness and burning and weakness sometimes all the way round as if I was wearing over tight skinny jeans ! At first I was worried about clots but my scan was fine ! I get incredible low back pain ! All a pain isn't it !
The itching that I got went away before I started with the symptoms that I have now. I know exactly what you mean with the skinny jeans feeling! I sometimes have to take my socks off too as I can't stand the feeling of them on my feet.
I've never had a definite diagnosis. I was sent to a neurologist who suspects peripheral neuropathy. He sent me back to my GP, but did offer to see me again if my GP saw fit. However, my GP then sent me to a physiotherapist who has now said that she doesn't really know how to help me and has not offered me a further appointment. I'm going to go back to my GP and ask him to refer me back to the neurologist. I'm tired of coping with it without really knowing the cause. The only pain relief I take is paracetamol and ibuprofen.
Hi Donna , it's sounds like we are in a similar boat , my doc who suspects PN referred me to a Neurologist in March just before lockdown , needless to say I've heard nothing! In my case it seems to be progressing quite quickly as I only really started noticing small symptoms at the end of 2019. The whole leg abs muscle weakness and feelings of cold and tightness have only recently started . I used to go to the gym times a week last year and have tried hard to exercise at home but I can see my muscles are wasting ! Anyway I feel there won't be a great deal they can do Enjoy your weekend !
In 2018 I was diagnosed with dunne vezel (thin fiber) neuropathy, a form of peripheral neuropathy, in both my legs. The discomfort stopped me sleeping and sitting for any length of time. The only relief I got was by walking. I was becoming worn out. Eventually the neurologist I was seeing prescribed Amitriptyline and this has worked for the most part. Amitriptyline is an anti depressant, but is also prescribed for neuropathic pain relief.
Hi, thanks for replying. I've heard that an antidepressant can help but I didn't know the name, thank you. Was it difficult getting a definite diagnosis? Most of the time I can walk without too much discomfort but sometimes my legs feel really heavy as if I've walked miles. I also find that my symptoms are worse in the evening of I've had a really active day.
My house doctor referred me to the neurologist. I had to wait a couple of weeks for an appointment. After a thorough examination and a subsequent negative MRI the neurologist prescribed the Amitriptyline. One thing the neurologist did say to me was that mood can play a role in neuropathic symptoms. I suspect she thought that mood was playing a role in my case. Let's face it, if you are in daily discomfort I think its only natural for your mood to be less than positive!
Yes, I agree. It is difficult when you're in daily discomfort. I've just come back from walking my dogs and my legs are throbbing like mad. I'm quite a positive person but I find this condition quite challenging 😳
Your description of your problems sound exactly like mine. I have had numbness and pain in my ankles and legs for a year now. It’s worse at night and when I get up in the morning it’s very stiff to walk. The description of feeling like ‘tight skinny jeans is very apt.
I do have diabetes but it’s well controlled. My GP is convinced it’s diabetic neuropathy but didn't give me any advice as how to improve the pain.
I have had blood tests and a test for PAD - all ok.
Now I am having pins and needles in my hands.
I hope to get a referral to a neurologist as soon as I can.
I also get extremely tired by the end of the afternoon.
Hi Maria, I'm sorry to hear that you're having problems too. I'm not diabetic but diabetes does run in my family. I too have started getting pins and needles in my hands but it is very intermittent. I haven't seen my GP since last year when he referred me back to physio. I'm hoping that when I next see him he will send me back to the neurologist. I find I'm less tired of I exercise more (but sometimes the mind is willing but the body isn't)! Take care and I hope you get answers soon 🙂
You may want to get Vitamin B12 blood test as low B12 levels can cause Paresthesis (strong pins and needles pain in hands and feet) plus Peripheral Neuropathy and a plethora of other neurological issues including fatigue and memory loss as I got after gastric resection Stomach Cancer surgery and Chemotherapy which both destroyed my prior excellent health from clean life full of rigorous exercise!
Ah thanks for the tip John. I was diagnosed a few years back with very low vitamin D levels and once the drs got me sorted out, my symptoms went away for quite a while. I also take folic acid, as I was told my body was low on that too, so your suggestion of vitamin B12 is spot on. It's amazing what a lack of vitamins can do to our bodies. I'm sorry to hear that you have had issues to deal with. I hope that things are improving for you.
Hi, I am the caregiver for a person who has severe peripheral neuropathy in their feet primarily which came about from having chemotherapy. I have been learning about the wide variety of things people are using to cope and deal with their own neuropathy issues at this forum: connect.mayoclinic.org/grou...
There you find hundreds of people who suffer this malady and do extensive and intensive discussions about it in a very in depth way. I encourage you to check that forum out in addition to this one as the people over there are very experienced and knowledgeable regarding their dealings with this illness, and new people come in with new stories and ideas every day. Good luck!
Hi there Dontie. Sounds very familliar to me. I came to the conclussion that you need to find the right doctor . Unfortunately I came across a few doctors that suffered from tunnel vision. To my great relief I found an old school neurologist that did his checks and his ( unconfortable) needle tests to check the respons time of my nerves. His conclusion was clear : polyneuropathy. Hé advised to have a second opinion in a University hospital. So I did. More fancy machines but same conclussion.
The thing is , I had the same tests done 2 years earlier in my local hospital. They did not find any issues. Polyneuropathy can be a slow progressive disease so maybe the signals were not that clear 2 years ago.
Later they blamed it on a slipped disk & stenosis. Hat that treated but the tingling, needle pains, dumbness continued. The neurosurgeon said: Sorry cant help you. You need a neurologist.
Word of advise:
- be your own boss
- ask questions and demand answers
- feel free to take a second opinion
- you, as a patiënt, knows best what you feel ( or dont feel in case of neuropathy 😉).
- write down in a diary how your day proceeds
- once you sit down or lay down there is less external stimuli that gets your mind of the pain or disconfort. So it might feel as if its worse....but is it ?. Becouse when you are active , do things or have a distraction, your focuss is less on the pain and disconfort.
Be carefull with the first steps when you het up from your bed or chair. Take it slow. I use a cane for stability !.
And ask yourself: What gives me relieve ?. A hot Bath ? A chat wirh Friends ? A good night rest ?. Good painkillers ?
Advise: Go to a specialised hospital or clinic that specialises in muscle / nerve diseases.
Also : Try not to get antagled in the web of many forms of polyneuropathy .
There are quit a few, with completly different treatments and medications. Idiotic polyneuropathy doesn't mean a lot. For one doctor its idiotic but for an other one, who had come across the same type before , its no longer idiopathic.
The fact that there is no ( accepted) cause doesn't mean its not there or not bad. Sometimes An idiotic diagnose is changed into a specific diagnose over the years.
Mine was probably caused by he use of a specific medication for Chrohn disease. Used this medication for 14 years.
Thank you so much for taking the time to comment. I’m very much a get on with it type of person, but I do have days where I feel absolutely defeated. I’m in limbo at the moment, as I haven’t seen a dr for quite some time due to the COVID-19 problems. My worry is that it will get worse over time and prevent me from being able to walk properly x
Not to discourage you but polyneuropathy is getting worse over the years. Slowly but surely.
If you cannot stand it anymore ( and I know I cannot advise this ) go to your GP and tell them you fell again or have a quality of live below zero and suffer daily. Demand an An appointment with a specialist. And as you say , you are a person " get on with it" the Risk is that you wont show your true feelings & suffering to your GP. But please do. Been there ......
Also feel free to contact a physical therapist . They have very good advise in hoe to cope with the unbalance and van help you train muscles that are not " infected" . Start to build up some extra strenght in your legs and that will enable you to feel more secure. Buy a stupid cane for indoor use Just to feel save. I did the same. A 2 mtr long strong guy in his fifties but with a trendy cane !
I also reed Vitamine D difficiancy This mocht cause muscle weakness and osteoporosis . Osteoporosis in the spinal cord van cause stenosis , this might put pressure on the nerves going to your feet and legs. Causing numbness, tingling etc. But mostly only on one side, so not Both feet or leggs unless the stenosis is right in the middle !
All of my symptoms disappeared once my vitamin D deficiency was sorted, but returned a few months later. I can go for a week or so with hardly any symptoms but then have a really bad couple of weeks.
Sorry if I get too direct. Vitamine D is actually not a vitamine. Its produced by our own body. If you take extra vitamine D you might risk shutting your own " vitamine D" factory down since there is no need for production, you have enough for the moment. When the added vitamine D is no longer sufficiant , your body needs to produce it itselves again , and that takes time. In the meantime your polyneuropathy gets worse......This way you end up in a vicious cycle.
Also vitamine D is used by diabetical polyneuropathy....
I am sure your glucose is regulary checked ( easy to do yourself !)
Not alt all, I appreciate your replies. I was told by my GP that I have to keep taking vitamin D as my body doesn’t produce enough. I’ve had diabetes tests a few times (both my parents are diabetic) I am convinced that my problems are caused by a bad fall that I had a few years ago. I landed heavily onto my coccyx and struggled to walk for quite a few weeks. I have had a full spine mri which came back fine and also a brain scan which was also fine. It just seems logical to me that my fall caused issues, but hey, if I was a Dr I wouldn’t earning the pittance that I ean now haha 😀
Yes, I would say so. I get tingling in both my feet almost constantly. My legs vary with either sore ankles around the front of my foot, aching legs, throbbing, or a feeling like I’m wearing really tight jeans. Most of the time the feelings come on when I sit or lie down, but sometimes when I’m walking they feel stiff and or weak.
Also realize that for example me, I had a full egr test 1,5 years ago. No problems. But I had all the sympthoms. Now 1,5 later its obvious. There are tests & tests . My latest one was in a University hospital, done by a neurological specialist specialized in neurological muscle diseases. I also had a full " echo" of the nerves.
Ask for a second opinion in a specialized hospital 👍
I am a 24 yr old female and I've had symptoms of peripheral neuropathy for the past 4 years. My neuropathy is idiopathic as well. I had an eating disorder for several years, but it wasn't until about 6 months into recovery that I began to random develop symptoms of peripheral neuropathy one day. It got worse very quickly and then has remained the same for years now. I've done many medical tests, blood work, seen all types of doctors and all of my tests come back normal. The only abnormalities I've seen is reduced bloodflow and low C3 level, positive ANA, basically just means there is inflammation. I have always been active, and eat a healthy diet. To curb the burning, I take 150mg of lyrica daily. After exhausting all options, I started to discover online about mind body syndrome. I know believe that neuropathy is the result of an overactive nervous system. The brain has an amazing ability to create neuropathways, however I believe my nervous system was bombarded by much higher levels of stress and anxiety once my eating disorder could not longer be an outlet to numb emotions. The body can sometimes send a pain signal out to different organs to alert that something is wrong, and then it can learn to expect that signal on a daily basis in anticipation of certain activity.
Most people when they first learn of mind body disorders are skeptical to believe it, but if you have tried all other options and your tests come back normal I would look more into it. You can always try doing a nerve punch biopsy to see if your nerves are in fact damaged. If it is mind body disorder there will be no damage, they will instead be overactive nerves.
I would highly recommend looking into this if this sounds like it could be you. Mind body syndrome can manifest as many different chronic pain disorders and usually has a trigger event and is common in highly emotional people.
Thank you for your reply, I will certainly look into it. I wouldn’t consider myself highly emotional, but I do sometimes suffer from stress. I normally go through bouts of IBS when this happens. I am a lady of a certain age lol and often wonder if it is anything to do with the menopause and imbalances.
Hello Dontie, Your symptoms sound so familiar. Mine progressed from mild tingling in my legs to severe burning, jolting pains, clawing pains and deep aching. Spread to other parts of me too. Worse when sitting or lying down. A nightmare at night. Had years of doing the rounds with different specialists, normal tests and given the brush off. Eventually got a diagnosis of an autimmune disease (they are hard to diagnose) that was causing peripheral neuropathy. After much begging for help I got a referral to local pain clinic who tried various options to help me. Peripheral neuropathy is difficult to treat and individuals respond differently. Some people find an antidepressant helps with the pain but I found the side effects too much. I eventually settled on daily Pregabalin which dulls things a bit. Small amount of codeine when I have a really bad night. I can't stand anything brushing my legs, anything tight or even sunlight or much heat. I bought a 'cradle' to lift bedclothes off my legs at night. Find coolpads helpful too. Always looking for ideas for more help though.I still manage a full life though with swimming, dancing, singing etc. I hope you get somewhere with your specialists and some treatment that mitigates your sypmtoms.
Hi, thanks so much for your reply, it’s so reassuring to know that I’m not on my own with this. I too am worse in evening and chase the cold spots in the bed until they’ve run out, so I think that I will try a cool pad too.
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