Muscular Dystrophy Community
Severe legs and arms pain all my life
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Muscular Dystrophy (MD) refers to a group of more than 30 inherited diseases that cause muscle weakness and muscle loss and eventually cause you to lose the ability to walk. Discuss topics including Duchenne muscular dystrophy (DMD), other types of MD, symptoms and ways to improve quality of life.

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Severe legs and arms pain all my life

Hello, I am new to this page and I want to thank all of you in advance who takes time to read my question :)

I am 22 years old now, and I have always had problems with my legs and arms. Since childhood I used to occasionally have sore legs, sometimes arms. As I grew older, the problem became worse, and it started to happen more often. How would I describe this pain: It is something like inside of my leg, basically what I feel is like somebody is cutting off my bones very very slowly. This pain drives me crazy, I take a lot of painkillers, pain goes away for a while but comes back in about an hour, seems like it has to take its time and then goes away, but taking time last for entire night!

I am from Georgia, where healthcare is quite expensive, therefore I never considered going to doctor as I could not afford it, but more importantly I was not enough attentive. 4 months ago I moved to UK, and as soon as I got here the frequency of pains increased drastically, now I get this nightmare nearly everyday. I went to a doctor 3 times already, they took several tests, checked for things on my blood, but all answers are coming back normal. She gave me Ibrupofen but it does not change anything at all. I don't know what causes this pain, I get it if I walk too much during a day, and I get it if I rest in bed all day. I stopped going to doctor as she has no answer to my problem.

I am writing this while I am laying in bed now and dying with this pain, I decided maybe someone has had the similar experience and could share it with me :(
And one more thing: my sister has the same problem. Maybe it has something to do with genetics, but none of my parents or grandparents has the same problem, so we could not find out what is it.

Any help would be greatly appreciated. thank you very much.
10 Comments Post a Comment
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209987_tn?1334790318
Sorry for the delay in response...have had no motion in my hands for several weeks...so was unable to type.

There are many things that come to mind when I think of your symptoms:
A Brodies abscess ( infection that starts in the bone marrow ). An MRI would be able to detect it. My eldest son went through 6 months of tremendous pain before they started running proper tests. The MRI showed  " something " abnormal...a hole in the center of his leg...where the bone marrow should have been. They told us at first that it was cancer...but after 3 months diagnosed him with Brodies.

The chances of both you and your sister having it though is extremely slim.
This would lead me to think that it's either genetic or you both came into contact with some sort of poisonous substance.

It could be a blood born type of arthritis...but that should have shown in the blood work...except, unless they were looking for it, they wouldn't spot it.
Is the pain in your joints or in the center of a bone?
Muscular dystrophy involves the muscles, therefore it would not cause pain in the center of a bone.

Hope this helps.
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Avatar_n_tn
Thank you very much for your time to reply to my question.

My pain usually starts in my knees and goes down to my ankle. It feels like there is something sitting inside of my leg and is eating my bones, I know it sounds funny but that's how I can describe the feeling. One more thing, I don't know if this sounds wise or normal at all, but I could always recognise that my legs used to get sore due to weather changes.

It seems to be genetic, as my sister has the same problem, and my grandmother too. Though none of them were able to detect what was wrong.

I think I will have to go to hospital and ask for Xray or some kind of scan to see inside of my leg, hope it will help.

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209987_tn?1334790318
Have you been tested for different types of arthritis? It sounds like this could be the case due to the pain during weather changes.
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Avatar_f_tn
i have also had leg pains in both legs since i was a child. although mine dose not sound as bad as yours it can be very painful, it usually happens at night or, when i am tired but is not necessarily related having a busy day. for me it helps to meditate on relaxing my legs and use a warm hot water bottle after a while the pain, although very intense just goes.you could also try ibuleve gel hope this helps
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Avatar_f_tn
I am sorry about your pain and frustration in getting a diagnosis.  It sounds awful. Since you don't have any answers, you might try getting tested for Borreliosis and Bartonella (both varieties of Bartonella, b.henselae and b.quintana). They can mimic several autoimmune disorders.  Borreliosis often causes deep muscle pain, joint pain, and possibly arthritis.  Bartonella can cause bone pain, especially in the shins. Both diseases can lay low in the body for years, flaring up sometime later, usually with some kind of stress, such as surgery, pregnancy, a death in the family, job loss, or a big move. Multiple family members often have these diseases because of common exposure.

Unfortunately, the blood tests are unreliable and are often false negative.  You would need a doctor familiar with these diseases to check you out thoroughly. You are welcome to post on the Lyme Disease forum or the SURVIVING LIMBOLAND user community (look at the bottom of the list of Forums) to get others' thoughts as well.

Have you been evaluated for Fibromyalgia?
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Avatar_f_tn
as tshock suggested muscular dystrophy could be your problem.. nuerologist and or the muscular dystrophy association if you are in the states would be the place to start.. you mentioned being from the United Kingdom? I understand it can take some time to see specialists there..my muscular dystrophy is responsive to treatment by diet and supplemention of potassium. It is importanct to note this is not universal however and only works with a couple of types of periodic paralysis and actually is not good at all for another.. so please check with a doctor and have them look into muscular dystrophy for you.. there are many many different versions and they are genetic diseases which can appear in several brothers and sisters in the same family. Hope you are doing better..kcb
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5674548_tn?1392244405
My 5 year old son has been suffering sever pain on both legs and arms, he can barely walk. The pain is constant, fever and when in pain the muscles feel hot. He used to be very active and it saddens and tear my heart to see him suffering. All blood test have resulted normal, CVC, Uric Acid & Arthritis has resulted negative. Also has been tested for Perthes Disease and its negative. Here in Belize three doctors have checked him and cannot diagnose him. He has only been treated with Ubroprfen and nothing has happen, he is getting worsen. Can someone assist in providing recommendatiions on what to do. Thanks
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Avatar_f_tn
I am 23 years old and about to turn 24 this month. I have had almost the EXACT pains you experience since I was about 16. I describe the pain as a "squeezing" type pain. It affects my forearms and calves at any given time. It can affect my right arm one day then two days later affect my left leg. However, the pain is always the same....excruciating pain. Pain at rest. However, say my left leg is having the pain, when I get up to walk on it it hurts worse. So, being at rest does not alleviate the pain but walking on it especially for a period of time kills me. I always contributed to nerve related because I felt the pain after taking a test at school. So I thought it was just my body reacting differently to anxiety. However, though it does come on during a very stressful day, it can also occur when I'm doing nothing at all. I just went to my neurologist today and he is running blood tests to look at my potassium and magnesium levels, my CK (muscle enzymes) b12 and folate. I did tell him that my father was just recently diagnosed with Muscular Dystrophy, one of the many different forms but his did not occur until his early 60s. Also, that my aunt has a form of MD as well. He said to get labs today and then to get a separate set of blood drawn on the same things when I was actually experiencing the pain to see if there was a difference in the blood labs. I am worried by the look on his face that the MD May be a possibility. He said he had only heard of people experiencing similar pain and slight weakness after they exercise or engage in physical activities, but yet mine happens on a regular day. Either way he is a brilliant neurologist and I know he will figure it out. I can keep you posted on what the results show. How often do you have the pain? And can it be both legs at the same time sometimes or one arm and a leg? Or is it specifically one leg and one arm on the same side?
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Avatar_f_tn
It's great that I finally found a community which has similar experiences like mine. Im 25 years old turning 26 this year. I've been experiencing legs and arms pain since I was 10 years old I guess. The pain varies from time to time. Sometimes Ive got pain from one tiring walk or hike or very cold temperature. The intensity of pain varies and I don't understand why. However, recently Ive been experiencing pain for almost 3 weeks now without definite reason. I'm sure I did not perform too much walking or hiking and the temperature is not too cold but the pain is still there. However the pain is not that excruciating but just moderate. Ive got blood tests measuring electrolytes, CBC and test for Uric acid but everything seems normal. Im being referred to a neurologist but Im still saving money for the check up and follow-up check up and examinations.

Ill wait for your updates regarding your results. Thank you!
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Avatar_n_tn
After several visits to doctors and many blood tests they found out that I have B12 deficiency. They gave me 6 injections in 2 weeks and I have to get one in every three months for the rest of my life. Since I have got all 6 injections, which was 2 weeks ago, I have not had any pain in my legs or arms. I am going to start vitamins daily to make sure I maintain the recommended level of B12. I would highly recommend to everyone who suffers from the not diagnosed leg&arm pains to get tested for B12, it only takes one blood test and can change your lives.
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