Burning Thigh that some of us get, with GCA and P... - PMRGCAuk

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Burning Thigh that some of us get, with GCA and PMR, or meralgia paresthetica

Whittlesey profile image
9 Replies

Hi, I was newly diagnosed with GCA in May, 2012. I was earlier diagnosed with "burning thigh" or meralgia paresthetica and had a nerve release in 2007. This may help those who aren't sure about their other symptoms. I also had to go to several experts on this, and waited about a year (a year of pain) for a correct diagnosis. I wonder if this is not related to the GCA. It is a form inflammation. I have asked my doctor, and he said "it is possible". Wish all health.

"...The diagnosis of meralgia paresthetica is primarily clinical. Nerve conduction velocity testing has been used 30,31 but generally has been ineffective because of the difficulty in obtaining sensory potentials for the nerve. Gateless et al 32 reported a qualitative difference in contact thermograms in six patients with meralgia paresthetica when compared with six controls. I have no experience with this technique and am not aware of any other reports concerning thermography in the diagnosis of meralgia paresthetica. Magnetic resonance imaging and computed tomography have been ineffective in visualizing the affected portion of the LFCN but are helpful in ruling out more proximal pathology. The diagnosis can consistently and reliably be made by accurately mapping the area of dysesthesia, confirming the involvement of the LFCN by judiciously injecting a small amount of anesthetic at the site where the lateral femoral cutaneous nerve exits the pelvis, and ruling out more proximal sources of L1, L2, or L3 nerve root involvement. Anesthetizing the LFCN is helpful in confirming the diagnosis and may be curative, but it is also useful in allowing the patient to experience the anticipated results of a nerve resection.

The initial treatment of meralgia paresthetica is conservative, and patients may benefit from analgesics, nonsteroidal antiinflammatory drugs, looser clothing, weight loss, and the judicious use of local anesthetics and steroids. In pregnancy, conservative therapy is indicated because the symptoms generally resolve after the patient has given birth.

Patients who fail to respond to conservative therapy should be considered for surgery, but there is no consensus as to the best surgical treatment. Hager, 2 King, 25 and Williams and Trzil 11 recommended resection. Stookey 10 advised transecting the nerve. Ghent 9 advocated excision of the posterior slip of the inguinal ligament to decompress the nerve, or transection of the nerve when this was impossible. Edelson and Stevens 28 recommended decompression in their pediatric patients, whereas Macnichol and Thompson 15 concluded that decompression was effective in less than half of their adult patients. Lee 33 and Mack 34 transposed the nerve laterally by cutting a slot in the iliac wing. Keegan and Holyoke 7 divided the posterior slip of the inguinal ligament and transposed the nerve medially. Aldrich and Van den Heever 35 advocated neurolysis with or without transposition and advised against transection.

Many of the earlier authors did not report long-term follow-up. To the best of my knowledge, the only published series of meralgia paresthetica patients with long-term follow-up are those of Macnichol and Thompson, 15 Williams and Trzil, 11 and Edelson and Stevens. 28 . . ."

link: ncbi.nlm.nih.gov/pmc/articl...

all my best, Whittlesey

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lyndyloo2 profile image
lyndyloo2

Very interesting indeed and horribly painful..

Strangely it was the burning thigh pain that was the final diagnostic clue for me. The doctor examined the thigh muscles and pressed them, it sent me into pain orbit!!! I went home with a prescription for pred and a diagnosis.

Glad to hear that you eventually received help. I just wish it were easier to diagnose. If I Understand the report you quote says nerve conduction tests are difficult, thermograms and MRI's not useful, so in the end the treatment is surgery or steroids.

It does seem to me (as a non medical person) to be connected. How very unlucky that you developed GCA, but glad you're getting treatment.

Whittlesey profile image
Whittlesey in reply to lyndyloo2

Hi Lyndyloo2, I'm glad that the burning thigh helped to give you a diagnosis. Yes, it does say that the nerve conduction tests don't always give accurate results. The main test that diagnosed meralgia paresthetica for me, -- -- I was at the neurologist's office and I couldn't get up. He got me into his office and then injected a nerve drug (not cortisone) into the area where my hip and thigh came together. Within a few minutes, I had relief and could sit down and stand up. He then said that my diagnosis was meralgia paresthetica. I had cortisone injections after that, then saw a neuro surgeon. I had one nerve release, but the fibers grew back and unfortunately I am dealing with it again. It might not be a bad idea to consult a neuro surgeon. For many people the release works for good. I use neurontin and put pain patches over the area, which helps. I agree with you that the two may be related. I think in both, it is inflammation. I hope you get some relief and I am glad you got the diagnosis. wishing you health. all my best, Whittlesey

Whittlesey profile image
Whittlesey in reply to lyndyloo2

Agreed Lyndyloo.

Took an Emg, they said -- neg for MP.

Neurosurgeon -- operated to do a release-- 5 beaches of the lateral femoral subcutaneous nerve were wrongly (painfully) connected to the ibguineal tendon. He cut away the wrongful tendons around the nerve on all five.

He said usually 1-3 branches were impacted -- first time be bad seen 5.

He said it might return.

Towards the end of the first year of being 'thigh pain' free, it began to return -- and now, badly -- again.

They can do a surgica --l 'cut off' of this subcutaneous nerve -- as an attempt to end this debilitating condition. I am going to ask for that.

My understanding of the relationship between MP and GCA is that the condition, present in GCA, arterial swelling, may be present in the arteties near the inguineal tendo. The swelling may force the tendon onto the subcutaneous nerve.

The tendon sends out a covering sheath to these nerves ( which should't happen) and the two become painfully stuck together.

There may be a relation.

Painfudebiltating. My left thigh is about 1/2 capability of my right thigh.

One that has one of these inflammatory diseases and burning thigh, should look into meralgia paresthetica and MP treatment.

best,

paddyfields profile image
paddyfields

I'm not sure I understood much of the above but this is the part which caught my eye

"The initial treatment of meralgia paresthetica is conservative, and patients may benefit from analgesics, nonsteroidal antiinflammatory drugs, looser clothing, weight loss, and the judicious use of local anaesthetics and steroids. In pregnancy, conservative therapy is indicated because the symptoms generally resolve after the patient has given birth."

Although my symptoms which point to PMR, yet to be given a diagnosis but no raised esr, the burning quads coincided the start of my second bout in four years of whatever is causing my localised aching, stiffness and systemic "fluey" aching muscle mainly in the lower half as far as function is concerned. I immediately recognised that the sore areas corresponded to the exact location of the horrendous pains I had when I gave birth to my first born 50 years ago which were worse than any other birth pain at the time and which no medic seem to recognise I had fleeting recurrencesof the pain /nightmares/long after the easy birth of my second child. Do we think the meralgia paresthetica is related to PMR/GCA in a causal way or just that the same nerves are affected which might point to what is going on with my lower half if it is not PMR

Whittlesey profile image
Whittlesey in reply to paddyfields

Hi Paddyfields, from my understanding of GCA, (and PMR), the GCA can go to other "major vessels" including those in the thigh area. MP is the femoral nerve and inguineal tendon. Possibly the femoral artery is involved, also. ? I do have other major vessel involvement -- the cartoid artery and two vertebral arteries. I think in my situation, there may be involvement in my thigh situation, MP and the GCA. I am not sure. GCA can move to other vessels. And I don't know how long I had the GCA before I was diagnosed. I have asked my doctor and he agreed, that it is possible. And the MP can occur during childbirth, due to the extra heaviness on that area during pregnancy and child birth. I spoke with a CNA, certified nursing assistant, and she said she had MP all during pregnancy and it did stop, it ended, after she had the baby. And she was able to go back to work. When mine is bad, I can barely get up. Good luck with it. The link on MP is pretty reliable, it is from NIH, which is our National Institute of Health, U.S. hope you get some relief. all my best, Whittlesey

paddyfields profile image
paddyfields

Thanks for that.

Whittlesey profile image
Whittlesey in reply to paddyfields

You're welcome, Paddy fields.

pms543 profile image
pms543

Thanks for this and the article in link, am printing top show my doctors!

Am recently diagnosed with MP but offered no treatment as yet...apart from A10mg Amitriptoline for night, which is useless so far

Whittlesey profile image
Whittlesey in reply to pms543

Have found neurontin (gabapentin) up to 400mgs, during a flare (100 mg a day, prophalactic), helps massage, pulling the thigh from the inguineal tendon, (which circles the stomach) and heat, helps.

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