Chronic leg pains since childhood, worse with cold weather.

Treatment and medication
1

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?

2

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...

3

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.

4

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.

5

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

more.

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

6

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?

7

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.

8

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 ...best wishes...

9

will keep in mind, thank you!

 

10

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!!👍😄

11

Hello, I empathize with you regarding ongoing leg pain because I suffer with the same thing.

Would you mind telling what year were you born?

There is a reason I ask this question & I am happy to explain if you're interested.

Best wishes

12

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!

13

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

14

I have identical symptoms.. why do you ask what year they were born?

15

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

 

16

Hi RPTP

Wow it's like you read my life time experience. A cold bone aching pain that comes out of nowhere and radiates down my left thigh or right thigh then starts the same cold bone aching pain in my knees. It can start in leg and cross over to the other. The can transfer same cold aching bone pain my elbows shoulder wrist ankles. Nothing but a hit bath or heat pack seems to help. Any cold wind or breeze kills me. I live in Australia and even during summer I get these pain my whole life. I used to put on sweat pants and tie long socks around my knees to try and stop the relentless cold aching pain. Even strong pain killer don't completely stop my pain

Myum had server chronic reumitoid Arthritis. And she said she gets same pain like a growing pain. We both test negative to RA test. And iv seen so many doctors you just give up. They think it's in your head or tell you to loose weight or just exercise more a RA specialist told me I have Osteo and I'm just sensitive to pain. I could go on.and on. Please let me know if you find anything. I post what I find. Cheers D

17

I thought I was the only one with undiagnosed leg pain, it started in my young 20’s and has never stopped. Both my mother and brother have the same issue but no where near as severe as I do. What I don’t understand is it’s intermittent. One day I’m fine the next They hurt so bad I wish they weren’t there. It hurts in both legs evenly, both ankles and feet, sometimes it radiates upward into the back of my thighs and into the hips. They ache really bad during cold or high moisture in the air. I can tell it’s going to rain by the pain in my legs. The pain goes from a severe ache to burning cold if that makes any sense. Sometimes if feels almost like pins and needles. I have seen every kind of doctor, had every kind of scan imaginable many many blood tests with no answers. Every doc I have seen tells me it’s neurpathy from having spinal fusion. The thing is my legs hurt way before my back ever did. It’s been 20 years and I have given up on doctors? My family practioner just ignores me when I bring up my leg pain, I hope one day we will find the answers from a doctor that will actually listen. 

18

Hi,

I know this discussion is two years old, but I just wanted to say that I too have been dealing with this since I was a child (I'm 27 now). I have always called them "growing pains" as well even though I've stopped growing years ago. Used to wake up crying from the pain calling for my mom and have to take a SUPER hot bath to get rid of them or a painkiller, however, these are not a guarantee and sometimes the pain is still there (although lessened) or comes back. Cold has always been an instigator and heat the pain reliever although sometimes I have to take painkillers when the pain is really bad (but I don't like to take pain relievers, so I try to avoid them). These growing pains control my life, I'm so tired of them. They have caused many sleepless nights and canceled outings with friends. I don't date much because I don't want to be a booby prize to someone. I get the pains in my legs (hips, thighs, calves, ankles, feet, and toes) and arms (shoulder, biceps, elbow, forearm, wrist, hand, and fingers). Sometimes both at the same time sometimes just one leg or arm. Usually, the worst pain is in the furthest exterior location, such as my fingers, hand, wrist, and elbow, or my toes, feet, calves, and knees, with the toes and fingers the worst. But when they are especially bad, the whole limb will be affected equally. I find I get weakness as well in the affected limb, although I'm not sure if it's because I baby the limb or not. Stretching somewhat relives the pain while I'm in the stretch however once I stop stretching the pain is immediately worse than before. I have noticed the limb in pain is cold to the touch. I always have hot microwave packs on me to relieve some of the pain. I have been taking Magnesium citrate and Epsom salt baths for years; these significantly help reduce the number of days I'm in pain. I've found there are a number of things that can cause the pain (although I find the cause of the pain somewhat unpredictable) such as: physically busy days, cold weather (coldness in general ie. air conditioning, basements, poor heating in building), dampness/humidity, stress, not wearing socks or warm enough pants, exposed ankles, too much sugar (currently on a low sugar diet), and not taking my magnesium. Generally, the pain starts in the evening, however lately that has been unpredictable and sometimes I wake up in the morning in pain, or have pain midday. 

 

I feel like I've given up on finding a diagnosis, and just focus on controlling the factors above that seem to cause the pain (although again this is not a guarantee). My doctor is not exactly proactive in finding a reason either; she did one blood test to see if I had juvenile arthritis and that was it. I live in Canada where one should just be happy a doctor sees you ONCE to address an issue and then gets annoyed because they can't find a solution and throws painkillers at you but never tries to find a reason or diagnosis to the problem. Any number of visits over one to find a diagnosis and you are declared a hypochondriac. 

Anyways, I should really start my own discussion as I have not helped to find a solution to your pain, but I just wanted to say that there are others like you out there. I also wanted to show that this issue really needs to be addressed and resolved because adults should not still be dealing with growing pains. And perhaps you recognize some of the symptoms and/or factors that cause the symptoms I have in yourself and can use some of them. Taking magnesium, following a low glycemic diet, and keeping warm would be the most significant solutions I follow. However again these are not a cure, they only help manage the pain. 

Also, I am wondering if you have found a diagnosis? If so please let us all know.

19

Hi jenalynn and others posting here; I've suffered from the same pains for as long as i can remember, I have Ehlers Danlos syndrome- hypermobility type and wonder if anyone here has very flexible joints? This has confused a lot of the doctors I went to as one one hand I had joint pain and stiffness but at the same time was very bendy. Unfortunately i haven't found much that helps with the pain other than really hot baths and sometimes sitting on my feet or using I've packs or standing on very cold surfaces. I also can't stand even the lightest touch to my skin km fact gentle touch is excruciating during a flare up- its so difficult to explain but makes me so miserable sometimes.

20

I meant cold packs- I also have very poor eyesight as a result of being extremely short sighted- another feature of my condition..