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Chronic leg pains since childhood, worse with cold weather.

I've gone to several doctors, found countless forums, and have tried various treatments, but I haven't found a single definite answer or diagnosis for my leg pains. I'm sure anyone who has them can relate to these characteristics, randomly occurring, no fixed amount of time, worsens with cold weather, relieved with heat or massaging, occurres in alternating legs and areas of the legs but especially in the thighs, not related to physical activity, makes walking painful, seems to be worse later in the day, and can come daily or have weeks in between.

The actual pain is best described as growing pains, but I haven't grown a signle centimeter in years. As a child I'd yell and cry from the pain, even now it is hard not to. The doctors look at me like I'm crazy since they haven't found anything wrong with my bones, and therapists don't know what to help me with since the pain isn't related to my posture or an injury. Special shoe soles haven't helped and I've had some doctors tell me I have flat feet while others say I'm fine. I've gotten some medication but it hasn't worked.

The forums all have tons or people like me, without answers, and so I please ask if anyone has any solution to the pains post it here.

I can't apply heat when I'm out of the house, and so the pain has interfered with my social life. I'm still in school, but if these pains continue I'm afraid they will interfere with my professional life. I don't want to sound mean, I know I'm not alone and that others of you have the same problem, but I post this for answers only. I've read of some who have gone as far as having surgeries, taken strong narcotics, and still ending up with the pains. Can anyone help?

26 Replies

  • lilian05079 RPTP

    Hi RPTP

    You do not mention if you have had any blood tests for your leg pain.

    Perhaps you could ask your doc for an ESR blood test for inflammation.

    The Erythrocite Sedimentation Rate will tell your doc you have inflammation

    going on in your body if the sedimentation rate is high.

    Go back to your doc and asked for an ESR test if you have not had one.

    Best wishes for a speedy diagnosis and an end to your pain...

  • sue84978 RPTP

    Hello RPTP,

    If your pains have been since childhood, then I'm pretty sure you've had the obvious investigations performed, eg MRI, CAT. Although now retired, my nursing days are always in my mind, & the 2 diseases that jump out at me are Perthes Disase & Raynauds Disease. Have either of these been tested for?

    Good luck.

    • iris83399 sue84978

      I have had a similiar ( sounding ) problem since childhood. Is it mainly in the lower legs ? I was diadnosed with shin splints. They began to go away in my late 20 's. Although , anytime I am on feet too long I will have a flare up. The best remedy I found is a combination of ice 9 on shins , and heat on calfs. Also putting legs up as much as possible. Sleep on a slight incline at night. Best way is to elevate the end of your bed with a cement block or bricks ( so entire body is elevated about 25% with feet upward ) Also , a great help is to wear compression tights during the day. Either knee high or thigh high. Hope this helps. No matter what pain is from . compression tights/socks might help , as well as getting  a leg massage.

  • googol RPTP

    Hi RPTP,

    I have chronic pain very almost identical to yours,

    but in the fronts of my ankles.

    I used Urgent Care in June when I became fed up of irritating GPs

    telling me I simply have flat feet, unsympathetic physios telling me

    my feet are fine apart from muscle weakness, people at school being

    less than helpful about my pain too. The doctor I met was very

    sympathetic and gave me MST 5mg (low dose = conversion from

    Co-dydramol and because I requested tablets instead of Oramorph).

    Unfortunately, although the MST were somewhat helpful, my school

    doctor refused to prescribe any strong opioids. She suggested that

    I would be better off with Diclofenac and Paracetamol with codeine

    as a rescue drug. I go to boarding school so I can't easily see other doctors.

    When I went to Malta over the summer, I saw a private GP who was

    BRILLIANT. He gave me Celebrex (allergic to Naproxen and Ibuprofen)

    and Tramadol. The Celebrex worked slightly, and the Tramadol

    was better than morphine, better than anything else I've tried.

    My supplies have since run out, putting me back to square one.

    I would like to try Versatis (topical anaesthetic patches),

    Cymbalta (works like Tramadol without opioid effect),

    Acupan (non-opioid strong analgesic),

    and Mobic (only COX-2 inhibitor recommended for teens)

    as they could be effective based on the other drugs.

    I find cold very painful, especially in combination with

    high-impact activities, but heat packs and compression

    stockings alleviate this better than co-codamol and

    co-dydramol. Crushed Dihydrocodeine tablets in a Voltarol

    base as a topical opioid have been effective, but I haven't

    been able to obtain much of either to do so.

    Nortriptyline at high doses at night were beneficial, but always

    made me feel hung-over and tired the next day, and again the

    difficulties of obtaining them prevents me from continuing them.

    Gabapentin and Pregabalin weren't effective at all, and did

    nothing but sedate me. Insoles just make my feet themselves

    even heavier and achy. Physiotherapy just makes my legs hurt


    I have had periods of weeks of severe pain, as well as weeks of

    none whatsoever. A child psychologist said that I was fine

    psychologically as far as she could see.

    My personal research favours peripheral neuropathy as the cause

    of my pain, but it is impossible to get any doctor to listen.

    If you don't mind taking weak opioids perhaps try Tramadol.

    Controls at school mean that I can't look after my own Tramadol,

    so it would be difficult for me to benefit from them.

    However, you may find them very helpful as I did.

    The non-opioid, Nefopam; the patches, Versatis;

    and the antidepressants, duloxetine and Nortriptyline, may also

    help your pain.

    All the best

  • nasimajama RPTP

    Hi. This sounds exactly like what I have. But ever since I gave birth to my daughter 2 years ago, it's gotten worse. The pain has spread to my hip right above my thighs, my ankles and just just above my knees. Even though those are the main areas, the pain is all over my legs. I have had this since I was 5 and so had my older sister and now my little sister has it. My GP have no idea what it is.

    Have you figured it out yet? Or received any help or been given any answers?

  • cherry15549 RPTP

    I think I have similar to you, but I get it in my ankles, knees, upper thigh, wrists and upper forearm. Me and my little brother have both got this, but he only gets it in his legs. I've been to so many doctors about this and like you they just look at me as if I'm out of my mind and then tell me I'm fine. Had one who literally just looked at my knee and said there is nothing wrong, wouldn't even hear what I had to say, my mother was appalled. I've had this since I can remember and you know what, i always felt like I was the only one. So I just thought I'd give it a bit of a search to see what would come up and well, this did. But well, I guess they haven't yet come up with any thing for this, reading the comments saying how it may get worse getting older, well lucky me being only 17 ha. Mind you I always felt like it got better as I got older but I guess I was just getting used to it.

    • lilian05079 cherry15549

      Hi cherry15549

      Have you and your brother had your calcium and vit D levels checked also if you are low in these you will get bone pain.....get the doc to check them via blood tests also check your magnesium and vit B12....low B12 can cause bone pain..... so get:-

      1. Calcium blood test

      2. Vit D blood test

      3. Magnesium blood test

      4. B12 blood tests......if you are deficient in any of them you can buy supplements or perhaps doc may prescribe them...if uour little brothers calcium is and vit D is low he could get ricketts...but get them checked asap and don't be fobbed off.. all patients are entitled to a second opinion wishes...

  • sue84978 RPTP

    Hi there,

    i see you've had lots of replies, although I haven't read through them. For what it's worth, has anyone mentioned Graves Disease? I'll have another think, but that's what jumped into my mind.

    Good luck!

    p.s. It's pronounced Graaves, not like the cemetery!!👍😄

  • mhborden RPTP

    My daughter has suffered from inexplicable leg pain every night for a number of years. We have finally found the cause... turns out it was a food intolerance. If your body reacts negatively to a food, it can cause inflammation in muscles or joints. For her it was Dairy — not Lactose, but Casein, which is still present in Lactose-free milk. We knew she was Lactose Intolerant, but did not realize that she was still being impacted by the milk she drank every day. The same reaction could be true of a Gluten allergy. Try an elimination diet. See if you notice a difference!

    • ahas25 mhborden

      Oh my goodness! I have the exactly same problem as above mentioned and also I have found my solution through the foods I eat. I too am lactose intolerant which helped once found out with my digestion etc but my leg pains still continued. I have chicken skin on my arms also, and a friend of mine told me her doctor stated it was from lactose intolerance so one day I thought I should cut out dairy for good.

      I am now two weeks into my dairy free diet and I feel fantastic! I have not had joint/leg pain once since I converted and I have a new job which requires a-lot more walking (which I was dreading as I thought my leg pains would trigger this) and nothing! I too agree with @mhborden, maybe you should change you diet around and see what works best. As I too went to doctors & specialists and found no answers. I've been suffering from this pain since I was around 3 years old and now at 27 I have found my solution, no thanks to anyone but myself. I hope this helps as I know this may not work for you but theres no harm in trying smile Good luck. 

  • julie04722 RPTP

    I use to get leg pain with the cold as a little girl also, only way it would go away was me tucking my feet under by butt to go away. I had my baby girl 2months ago, and I have a leg pain that started in my left with also leg spasm or what ever it is I feel in my leg feels like I have beans or something jumping inside them😂 it's been driving me nuts now nowing why both my legs hurt now. Pain comes and goes, and it's been driving me insane making my anxiety go off the roof. I made an appointment with a neurologist to see if it can be a nerve trapped. Because i also get a hot burning sensation on my legs at times. My knees have also been aching a little. So I understand you, now knowing what's wrong drives us crazy!!! I cry & cry bc in scared it's something horrible

  • Hellokitty11 RPTP

    Hello, I sincerely apologize for taking so long to explain why I asked what year you were born. My home was broken into & it's taken a while to replace my laptop.

    Anyone suffering this symptom, please ask your mother (if possible) whether she was given any medication or exposed to a toxin such as glyphosate when she was pregnant with you. Many mothers are not comfortable answering this question so please be mindful of not offending however you do have a 'right to know' about anything you may have been exposed to that could have caused any health issues.

    My mother was given Distaval when she was pregnant with me & it caused peripheral nerve damage in my arms & legs. Distaval is thalidomide which caused the World's Worst Pharmaceutical Disaster. Babies were born with deformed or missing limbs among other malformations. Babies were also born looking normal but health professionals did not know until 2 decades ago that the drug also caused autoimmune disease in some people as well.

    Health professionals knew that thalidomide caused peripheral nerve damage but there was no follow up on babies born looking normal. The thalidomide people were forced to sign confidentiality agreements in order to receive their compensation. After reporting the same thing to Doctors since my early 20's I did not find out until I was 53 years old that the government knew all along why I had painful muscles. It was kept quiet for 50 years that thalidomide caused more harm than first reported to the public.

    Best wishes


    • Momsmess Hellokitty11

      I can SO relate to the desperation in trying to find ANYTHING that will take that knawing, exhausting pain away. Many doctors think it’s all in your head and send you out the door quickly! This is the first forum I’ve ever seen with so many posts on this topic.  I’m wondering if you may have gotten to the root cause of my leg pain that has been around for nearly 50 years. I’m nearly certain my mother took thalidomide as she took phenobarbital for many years too. My leg pain started as the growing pains many speak of. Severe unrelenting growing pains at least once a week. Cold wraps helps somewhat though I usually passed out from exhaustion. 

      As an adult I went to every doctor and tried everything imaginable. I have Myofacial Pain Syndrome and Fibromyalgia and all the markers for Lupus. The only thing that gives me about 70% relief is Fentanyl patches. They allow me to work full time, and kept active. My insurance cut my allowance in January and refused to pay at all this month, though I’ve strictly adhered to my pain contract, complied with every requirement and never asked for an increase in my allowance or misused my medicine. My doctor says her hands are tied, as are most in her field. Many in my support groups  have lost all access to any opioid medication and we are all just so despondent about having worked so hard to find relief from our various chronic pain conditions, only to have the government take our lives away. I’ve written letters, signed petitions, made phone calls, to no avail. Many are fighting for full disability, though we’d all just like the right to continue our treatment, pay for our medication and be active. 

      Sorry I can’t offer much hope. The remedy I finally found after decades is being gradually taken away. There is some comfort in seeing that I’m not alone with this weird chronic pain though. 

      Gentle hugs. 

    • wuggs16 Momsmess

      I don't know if it is yet legal where you are but I have heard that Cannabis oil works wonders on fybromialgia and other spurious pain. I am not yet at the stage of taking it myself as it is quite expensive but I would certainly consider it. In Scotland it is only the processed version which does not have all the natural benefits but it is something to think on

    • Hellokitty11 Momsmess

      Hello Momsmess

      My name is Michelle & I live in Queensland, Australia. 

      I would be very grateful if I could talk to you about your thoughts on whether or not thalidomide is the cause of our leg pain. My email address is [email protected] if you would like to share information or I could start a new post on here? Apologies to RPTP.


      Thank you 



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