The Knowledge Board:
Meralgia Paresthetica
Hi I'm Belinda I'm your community manager at The Patients Voice.
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Welcome to our new ResBlog (or online research web log) which hopes to find out more about the experience of people with Meralgia Paraesthetica.
Meralgia paraesthetica (which also can be spelt meralgia paresthetica) or a burning thigh pain is numbness or pain in the outer thigh not caused by injury to the thigh, but by injury to a nerve that extends from the thigh to the spinal column. Common symptoms may include:
• Pain on the outer side of the thigh, occasionally extending to the outer side of the knee
• A burning sensation, tingling, or numbness in the same area
• Occasionally, aching in the groin area or pain spreading across the buttocks
• Usually only on one side of the body
• Usually more sensitive to light touch than to firm pressure
We are running the ResBlog because we are interested in the opinions and experiences of people who suffer from Meralgia Paresthetica
In particular we are interested in exploring the following aspects:-
• At what age did you start to suffer from Meralgia Paresthetica and what were the symptoms?
• Have you found it getting worse since then?
• How were you diagnosed? Was it your GP? Were you referred to a specialist?
• What type of tests did your doctor recommend? Were you given more than one diagnosis?
• Were you given an explanation on the possible causes of this condition? Were you satisfied with this explanation?
• What treatments have you used? Have you tried “alternative treatments”? If so which ones have you used and how effective were they?
• What impact if any has Meralgia Paresthetica had on your working life?
• What was the quality of support like from Healthcare Professionals such as physicians and nurses?
• If you had one piece of advice for a fellow sufferer what would it be?
• Would you be interested in contributing to an online encyclopaedia for other patients?
Thanks very much in advance for your help. Please feel free to check back on the blog to see what others have said and perhaps contribute further thoughts.
As with all our market research projects, of which this ResBlog is one example, the responses of people who participate are anonymous. This in line with market research codes of conduct. To participate all you need to do is scroll down to the comments area, type a nickname of your choice and then put your comments into the box. To find out more about what we do both in terms of work for our clients and our patient communities and resources please feel free to explore our web site further if you have not already done so?
I look forward to reading your comments and, of course, thank you very much for your input. Finally can I ask you to bear in mind when you blog that you comments will not just be read by other bloggers and The Patients’ Voice team but also, in some cases, the clients for whom we work.
Best wishes
Belinda
PS: Please feel free to share this blog with anyone who you think might find it of interest
Moderator | 14/06/2007 12:09:00
Hi Thanks so much for joining us. I look forward to reading your comments Belinda
LHR | 14/06/2007 12:30:00
I have been suffering from a tingly, numbness almost burning sensation on my right had thigh/knee are for a year an a half. At first I did not notice it much and thought that the sensation was just on and off. After about a month I realised that the sensation was actually constantly there 24/7 and started to worry about it. I thought there was something serious causing it and I did not know how to describe the sensation I had to other people. I used to say: ‘its painful, but its not inside the thigh or the knee, its just in the skin. It’s numb, although it is not really numb’. So friends and family did not really understand what I meant. I then went to my GP and discussed with here the symptoms and she thought that it was my anxiety causing it as I suffer from panic attacks and have often a tingly (numbly) sensation in my face, arms, neck and hands. She thought that it was worth seeing a Neurologist. (I have been suffering from panic attacks for more than 20 years – on and off) I went to see the neurologist and explained the symptoms again and it moved my leg around and thought that there was nothing wrong there. He was surprised that I was referred to him and not to a Orthopaedic specialist. He did say however that as I suffered from panic attacks it was worth investigating whether my panic attacks were actually a different form of epilepsy, so he prescribed me a MRI to my brain. The result came in and there was no form of epilepsy whatsoever and no abnormalities at all. This was really reassuring for me as I had also thought that my numbness/tingly sensation was maybe di to multiple sclerosis and obviously the test had ruled that out. The neurologist however thought that an MRI could still miss some traces of epilepsy and suggested a Electroencephalogram to rule out epilepsy for sure. So I went to have the test done and during the test, which is very distressing, I had a major panic attack whilst I was all wired up. Although in discomfort, I was happy as I thought the trauma of the panic attack was being recorded and I could see what was happening in my brain. To my surprise, the specialist said that the EEC did not record any abnormality and therefore the panic I had was all to due with ‘emotions’ and no traces of epilepsy were found. The neurologist then sent me to an Orthopaedic surgeon, and he immediately thought that the symptoms I was describing to him were those of Meralgia. He wanted however to rule out any other cause and prescribed me an MRI to my knee which showed no abnormalities. He then prescribed me a nerve-conductive study and that one showed that a nerve starting in the stomach and going to the thigh/knee area was not working properly. The neurologist advised me that I could either choose to have some cortisteroid/anaesthetic injected, but this may not work, or to do some physiotherapy. I chose physiotherapy. So I have been seeing a physiotherapist for about 9 months but not very often (sometimes once a week, sometimes every 4 weeks. The physio thinks that I actually I have a micro tear in the muscle near the knee/thigh area and that my back is too stiff and this is causing the sensation. The massages he does to my thigh and back are really painful and I end up being exhausted after each session. Yet no real improvement on the sensation. Sometimes he applies ultrasound and that gives some relief. In the past 3 weeks I have now noticed that the sensation is starting on the other leg as well. Naturally I am worried sick as I see a bleak future with both of my legs with this horrid sensation and I fear that I have been misdiagnosed and the real causes have not yet been found. The sensation on my right leg sometimes is so severe; it’s almost as if it is burning. I went to my GP the other day and she told me that I would mostly likely have to live with it and accept it. She advised me not to have the cortisteroid injection as in her view this won’t really work. I don’t know anyone who suffers from this and I would love to hear if anyone has had a similar experience and know of any possible cure. Thanks.
Bonnie | 14/06/2007 23:12:00
I was diagnosed after several weeks of intense and growing burning pain in my right leg. I was 46 years old and had just finished moving. At first my GP thought it was from over-working. Then he thought it may be connected to my MS (they always go back to the MS!) I had an appointment with my Neurologist and he suggested it may be meralgia paresthetica. He gave me more painkillers (tylenol 3), reccomended I used topical painrelievers, and soak in a warm tub (heat is bad for the MS.) About 1 month into it I couldn't bear to have anything touching my leg. Most of the time I wore very baggy scrubs and slept with one leg outside the covers. If the cat jumps on my leg I was in screaming pain for at least 5-10 minutes. It finally went away about 45-60 days after it started. I occasionly get twinges/burning in the right thigh but I immediately get off my feet and either get into warm water or raise my legs (seems to help.)
Spikermom24 | 19/06/2007 00:02:00
I was in a car wreck in 2001 in which my left hip was dislocated, the door was folded in holding my hip in doslocation for close to an hour. The MP didn't start for several weeks.
My GP gave me no help what so ever. He told me I would have to live with it. Then I saw a chiropractor, who helped some, but finally gave up and sent me to an orthopaedic specialist. They prescribed Vicodin, steroid and cortisone shots, physical therapy, muscle relaxers and sleeping pills. None of which helped. So I lived with it on OTC meds until about 4 weeks ago when a search brought me across MP. I talked to the neurologist that treats my seizures and he did some tests and diagnosed the MP.
My Mp had gotten so bad that I didn't even want to be around people or participate in anything anymore. I would cry when I was alone. Sleeping was near impossible. I was made to feel like it was all in my head. I live on a farm, so I wasn't working outside of that, but I couldn't help with the farming like I did before. I gained a lot of weight from depression and inactivity.
The Neurontin I started almost 4 weeks ago has heloed quite a bit, but where there used to be burning is now a lot of pain. I guess I didn't feel it for the numbness and burning. My neurologist is really great, he is understanding and really listens, never maiking me feel stupid. And never once has he told me to learn to live with it. But like I said, it has taken 5 years to find someone who gave it a name and told me we could find a way to treat it. Biofreeze was what I used before from my chiropractor and it would help temporarily, but when it wore off it was back with a vengence. I go see my neurologist again on July 2 to see how the Neurontin is working and he said we would take it from there. I wonder about a pain clinic though?
My only advice to other sufferers is to not give up, we are not crazy, we really do have something wrong and we don't have to live in pain. There has to be a treatment out there somewhere that will work for each and every one of us. To LHR, I tried deep tissue ice massage, what a nightmare, the deep massage only seemed to aggravate it. I stopped after just a few sessions. I also have to sleep on my side with 2 pillows between my legs and 3 between my knees. I important thing is that we can't give up on ourselves, we have been through too much and come too far to give in. And if there is any relevency, I am soon to be 46.
Andy | 01/08/2007 03:07:00
I had a fairly minor incidence of MP in my right thigh for about the last four years - it didn't seem minor to me though, so I sought treatment for it. It was a numb patch with a little line of burning pain in the middle. Not a lot compared with what other people here are reporting.
After falling out of the system for a couple of years I was eventually referred to a neurosurgeon with an interest in peripheral nerve impairments and in treating them with surgery. A fortnight ago he operated, performing what I understand to be a fairly experimental procedure.
Since then I have been in constant pain over most of my upper leg and the areas of numbness are greatly increased. I need two types of painkillers in order to walk without a limp, and even then I can only get away with short periods of activity. Immediately after the operation I reported the pain / numbness, which was greeted with some surprise by the more junior doctors in the surgeon's team. I was told to see how it settled down over the next week or two.
With those two weeks now gone, and the painkillers running out, I am terrified that what I am experiencing now is what I am stuck with for life. I am 39 years old, I count long distance walking and other outdoor activities among my hobbies, and today I acquired a walking stick from a friend who saw I was having trouble standing without one. I am typing this at 3am because my leg won't let me sleep. And today was a good day, relatively speaking.
Of course, it's possible the nerve is being compressed temporarily by some as-yet unhealed part of the incision, or is in some way being affected by the aftermath of the operation. If that's the case then my situation may yet improve. It's only a fortnight, after all.
But right now, I am a very scared man.
Prades | 08/08/2008 13:13:00
I am having burning sensation in thgihs pls suggest
Kelly | 12/08/2008 21:33:00
4 years ago I developed sudden severe burning pain in my right thigh 6 weeks after having had gastric bypass surgery. It felt like an iron being held to my thigh, with frequent bolts of lightening shooting though as well. I was diagnosed by a nuerologist a few weeks later and prescribed 25 mg Nortriptyline, 50 mg Lamictal and Lidoderm patches. Side effects of the meds made it very difficult to work for about one year, although I managed to continue working. I was given nerve conduction tests, blood, work, MRI's, lots of electrodes and shocking, poking things. None really conclusive, no loss of motor control, so they figured it was MP. I tried acupuncture, TINs, everything that anyone suggested and none seemed to make any difference at first. I had to get off the meds in order to function, so I had nerve blocks done several times a month for several months, which eventually made it somewhat better. I stopped taking Lamictal about 2 years ago and the side effects have dropped to almost nothing. The pain is barely noticable now as long as I take Nortriptyline and use Lidoderm patches.
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