Quick relief for Sciatica pain, EM progressing? HELP!

General
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Hello I am a new member from Slovenia (Europe) and English is not my first language. I hope you will understand me anyway. I suspect I have widespread Em (burning, redness, needles and pins… I have been searching to find a doctor to give me diagnosis. So far without success, the doctors i had visited so far, didn’t even hear about Em. GP, 2 rheumatologists, anasthesiologist… When I show them EM flare photos, they don’t have a clue- I’m desperate.I’m still waiting to see dermatologist and neurologist. So far i manage my symptomps by elevating legs, cool strategies, pain killers and sleeping pills…thank’s god I’m not working at the moment…but today suddenly sharp, excruciating pain emerges in my right leg from my buttocks, down my thigh and calf, it feels like someone is pulling a barb wire through my entire leg. Leg is not red and hot, the foot is extremely cold. The pain is unbearable, I took a bunch of painkillers (Ibuprofen, mix of tramal and paracetamol. Could this be Sciatica? What kind of relief do you recommend? Can this be a side effect of low IV lidocaine infusion? I recieved 20 mg 4 times by pain managment doctor on my request, after I had showed him some American studies. As soon after IV administration my legs started to swell and turned red (balooned), swelling has never resolved, I noticed i had problems with constipation, bloating, acid reflux, and weight gain. Anesthesiologist said the dose was too low for any side effects. I’m afraid that these doses would do more damage than good, because Mexiletine is not available in our country to countinue after. I don’t judge him, he is the only person who is trying to help me somehow, eventhough he is not experienced in Em. I would appreciate any kind of advice from your fellow sufferers. I am all alone in this country, Please help me with your advices. i admire your strenght and courage. I had suffered a lot in the past (RA, Fibro, breat surgery etc, but this horrible EM condition, I couldn’t cope much longer. My family doesn’t understand or support me. This redness seems more like a cosmetic problem to them.

I’m sorry if I was too long, appreciate any kind of advice. Carter I would really like to get your opinion on administration of Lidocaine and Mexiletine , you should get PhD in EM honours.

Good night sleep tight, It’s almost midnight here, I pray for at least two hours of sleeping.

Frankie

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Hi there

I am so sorry you are in pain and going back and forth in your head why :frowning:

I have gotten some lidocaine infusions and at my weight (110 pounds ish) I get 350 mg lidocaine in a 1 hr monitored outpatient hospital setting. I know some people get 600 - 700 mg total over 4 hrs. In the link below, the young man received a 450 mg lidocaine in an outpatient setting.

So I really think 20 mg per infusion is way way too low, to have any real effect whatsoever, except possibly if you were allergic to lidocaine or something like that.

I am sorry you feel all alone in your country; i hope you can get some more guidance and support here …

take care

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Thank’s standing_cat, how are you doing? Thank’s for the response and link. Are you in a lot of pain?
Do lidocaine infusions help you? How often do you get them? Do they give you oral Mexilitine also? What kind of medication do you take? Do they help you with pain and redness? Have you ever felt normal, painless with EM? Please tell me more about your EM management. I 'm lost and confused I can’t deal and cope with the EM without any support. Please give some hope, I’m totally desperate and alone.

Thank you, wish you all the best!

Frankie

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Thank you for the kind words. I see your profile says onset occurred after using a treadmill. Did you have an injury? As you may know from my posts, I had acute onset following a treadmill injury. I never had a lidocaine infusion but have had success with mexiletine. If you believe the lidocaine infusion caused unwanted side effects, have you considered a lidocaine patch? I’m not sure how practical that would be if you are suffering symptoms in many different areas, but it is something to consider. Have you ever had lidocaine administered locally for dental work? It is commonly used by dentists. That could give you a better idea of any potential allergy.

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Dear Carter, I didnt have any injury. I started using treadmill because doctors told me it would help me with leg swelling.(Thighs and legs started to swell a year ago after MRSA decolonisation protocol with hibiclens, mupiricin ointment ,chlorexidine gargling and oral Vancomycin,(i have still MRSA in my throat) I had noticed that my skin was not the same, became sensitive, saggy, red after showering) In December After only half an our of moderate walking, legs turned red and inflammed I stopped using treadmill thinking it’s just inflammation and it will resolve with a rest. It never did. I tried to rest and used cold water Kneipp protocol. It helped a bit and I could sleep at night. But after I had used vibrating massage machine, my hands turned red immediatelly and EM started to spread rapidly to upper parts of the body and feet. Feet haven’t been involved before, just knees up to the thighs that were swollen, burning and painful. I’m in such horrible pain I can’t sleep, I can’t do anything but lying on the sofa with legs elevated. I’m waiting to see some specialists, but i don’t think they will be of any help. I don’t think I’m alergic to lidocaine. I trust you more than this stupid Slovene dr. Please give my some advice, what kind of test do you recommend, would MRI, CT capilaroscopy be of any help.
I consider to find a dr who is familiar with EM in Germany. What do you think? Do you think my EM is secondary? Thank you, I’m glad you are doing so well, you are my inspiration!

P.S: I give you my treadmill for free lol, I won’t step on it ever again.
Frankie

I put lidocaine patch on my leg, but It didn’t help much.

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Frankie -

It is so hard feeling alone with this and in pain + desperate. <3

My pain doc recently ordered lidocaine outpatient iv’s every other wk for me as outpatient, but I have yet to start. For me it is the best thing by far for heat tolerance and letting me leave my home, however for me it doesn’t last long, a few days for each, but I do think in my case it is worth it (not to say it is very hard when the pain comes back). The doc said weekly iv’s might be an option in the future. For whatever reason I do not respond well to mexiletine.

I am fortunate that I think I see very good docs (2 derms and a pain management doc), but at some point I think it devolves into trial and error per patient. I’ll link you the EM patient guidebook in case you don’t know about it. I think polypharmacy is often needed for a foothold on things. The biggest help as far as oral medication has probably been high dose cymbalta for me (helps with swelling and pain, 100 mg but still going up).

There is also a helpful facebook EM group. Wishing you the best as well.

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First, I should point out i’m not a doctor. What I succeed at is organizing information in such a way that it allows others who are to make informed decisions. EM remains a mysterious condition and the circumstances of your illness are fairly unique. You’ve mentioned a number of comorbidities (RA, Fibro, etc) that could affect symptoms. To that end, I have a few questions.

  • Are you still being treated for rheumatoid arthritis and fibromyalgia? If yes, are symptoms well controlled? If no, how long did symptoms last for each and when did they resolve?

  • What came first, the edema (swelling) in your legs or the erythema (redness, heat)? (Your profile seems to indicate the edema happened first.)

  • What did doctors think was causing the edema initially?

  • How much blood work have you had done?

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Hi frankie. So sorry about your pain.

Have you considered it may be Lyme disease from an insect bite? It’s usually from ticks but where I live, in California in the US, my Lyme literate doctor is treating people who got it from a mosquito bite. I suffered for many years not realizing the cause. I saw many, many doctors including visits to the Mayo Clinic and Stanford, but they weren’t much help. Finally a friend on social media suggested it could be Lyme. On the internet I learned that due to the politics of Lyme in the US, very few doctors even suspect Lyme. When they do test for it, the ELISA test is so bad that false negatives are quite common. That happened to me, I was tested twice in two years and both were negative so I was told I didn’t have it.

After a bit of research I found a Lyme literate doctor who was able to recognize it from my symptoms, later confirmed with positive results from IGeneX tests. In Europe you’ll likely get the Armin tests. What we have to do here in the US is go outside the traditional medical system to find a Lyme literate doctor (LLMD). I don’t know what it is like where you live but you may want to join some Facebook groups to ask for LLMD recommendations in your area. Many here have to travel long distances to see an LLMD.

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Dear Carter, I’m sorry for late response. After getting my 30 mg of Lidocaine IV on Thursday, I became so sleepy, drowsy and tired, I slept 24 hours straight. I’m feeling much bette,r even though my legs still turn red.
I know that you are not a doctor but you are a very clever, knowledgeable person and EM ,who suffers yourself, so you understand this horrible disease better that any doctor. You were forced to become your own doctor in order to help yourself, to educate other doctors about EM treatment options and you succeed. I admire you very much.

I’m still being treated for RA, officially (MTX, Sulfasalasine, Resochine) but I haven’t been taking these drugs since 2005 when my illness went into a remission After a successful synovectomy of MTC joint had been performed.
I don’t think I have RA because joints on the right hand and wrist were inflammed only.(usually is bilateral) Diagnosis was made due to elevated RF in blood. I’ve always suspected some kind of connective tissue disorder (SLE; Scleroderma…)because i was fatigued, achy all over, had terrible headaches and elevated BT 37,2-37,5 celsius, but all tests ANA, ENA, anti double stranded DNA…were negative.
2 years ago i was daignosed with Fibro because I
had muscle pain and some tender points, but I’m not sure of this diagnose either. They put me on Cymbalta but I couldn’t handle horrible side effects.

The edema came first, soon after MRSA decolonisation protocol, than erythema, after using treadmill. I forget to mention that prior to that i had started to lose all my muscle and fat tissue in upper body without changing eating habits. I had seen many doctors, I had gastroscopy, CT had scan, full blood check done, they hadn’t found anything but slightly elevated ESR, CRP, body temperature 37,5 celsius but nothing significant to them. Doctors said it was all in my had. When my life had become unbearable,( I was hardly functioning, BT started to fluctulate (37,2-38,9 celsius) ) my rheumatologist had referred me to an infectious disease specialist. She found (MRSA, Epstain Barr, Mononucleosis-latent phase) and the decolonisation process began…

My GP didn’t see any edema or puffiness because I’m very skinny and it was not pitting edema.

Blood work done so far: I have CBC done(ESR elevated , chemistry and thyroid panel (low T3, high T4, raised anti TPO antibodies - Hashimoto), hormone panel (low testosterone, SGBH high, estrogene and progesterone level appropriate for my age not even perimenopausal), nutrition tests (vitamin B 12, iron)-iron level high, vitamin D low), serum protein electhrophoresis (gamma globulin high (they explained that meant chronic infection somwhere?!, Alfa 1, alfa 2 globulin low) - I’m still waiting for neurlogist, dermatologist and endocrinologist appointment, EMG, capillaroscopy. I was tested for Lyme disease 2 years ago elisa test was negative, but I had had positive test for Lyme in the past (many years ago) and erythema circle around tick bite but it resolved spontaneously so doctor told me I was treated and I didn’t need antibiotics.

I agree I’m not an easy EM case to solve but with your excellent knowledge I hope you are going to figure it out.

Stay cool, Frankie

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Carter, I forgot to mention that my skin was very sensitive and painful to the touch, especially above the knee and thigh area. Skin and the deeper layers of the skin are swollen and tender, the skin is getting thickened and rough. The thickening is getting worse (the upper legs are getting bigger and disproportonate to the rest of the body) and it doesn’t subside even when the symptoms; redness and swelling are absent. (The trousers don’t feet anymore) I must say that swelling never resolves completelly. What could this be? I saw 2 different plastic surgeons because I thought I had had lymphedema or lipedema.(prior to erythema) They hade both excluded lipedema that my sucontaneous fat is to low, but had mentioned that there was something wrong with my connective tissue, elasticity, fat athrophy, and pointed to some kind of autoimmune disease (one neurodermatitis, the other Ehler Danlos syndrome). They both agreed that it would be very difficult to find out the reason and diagnose me, I should be admitted to a special center with a bunch of specialists (immulogist, rheumatologist…) consulting each other to come to the conclusion. In my opinion my EM is secondary to other strange, rare autoimmune disease. Please tell me what do you think. I would really like to hear your opinion.

Thank you Frankie

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Dear standing_cat,

thank you for your kind words. I don’t have much hope. So far I haven’t found any doctor familiar with EM. I’m showing the photos of my leg to every single doctor I’ve known and no one has never seen something like this and wouldn’t have known how to treat this misterious ilness. My best option is to find a specialist for EM abroad (Germany or Italy) at least to get diagnose and if i’m lucky enough maybe an insurance company will refund some treatment expenses because there isn’t a single dr in Slovenia capable of treating EM.

Otherwise how are you doing? May I ask where you were swollen, in the feet or in the whole legs? Did you notice any skin thickening and changes too?
Last time a nurse couldn’t put an iv into my vein because it was so stiff and thickened and it hurts like hell. She said she had never experienced something like this before. Have you ever had the same problem? Have you ever felt like your veins are going to explode?

Wish you all the best

Frankie

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Dear @graciousgeekgirl,
thank’s for an advice. I was tested for Lyme and the ELISA test was negative. I was not aware that other tests existed. I was tested positive for Lyme many years ago with erythema circle around thick bite, but dr didn’t give me any antibiotics, because erythema had disappeared on its own. Later Elisa test was negative and dr said it was cured by immune system itself.

I will try to find LLMD to perform this IGeneX test-

I’m thankful for any advice I’m willing to try everything.

Frankie

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It sounds like you may have chronic Lyme. Your doctor should have given you antibiotics back then even though the bite area disappeared.

If you were bitten in Europe then the Armin test may be better (blood samples are sent to a lab in Germany). The tests look for specific strains of Borellia which may be different. An LLMD will know the appropriate tests to order.

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A few things in there caught my attention.

  • You say your iron is elevated. Are you post-menopausal? It would be extremely unusual for a menstruating woman to have elevated iron.

  • With regard to the muscle and fat loss, how significant is the wasting? How much weight did you lose?

  • You’re right about the RA diagnosis. RA can’t be unilateral absent a central nervous system disorder. So you need to consider other potential causes for said inflammatory arthritis and diseases that can mimic Rheumatoid Arthritis.

  • Did the tic bite you mention precede the inflammation of your hand and wrist? Was there any infection that preceded said inflammatory arthritis?

  • Have you ever been diagnosed with psoriasis?

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@CarterDK

Yes, my iron level is high 196 ref ug/dl 50 - 160
transferrin saturation high 53 ref % 16-45
ferritin low 26 ref ng/ml 30-150
and my period is still regular and heavy (fibroid 12x10 cm), in my opinion there is something wrong with my metabolism (liver and digestive system) because thyroid hormone T3 is also low, which means that thyroid hormone T4 (normal value) is not converted into T3 in a gut properly. I think i have had leaky gut problem since my whole digestive system had been washed up by antibiotic Vancomycin for MRSA decolonisation. It had killed my whole gut flora except MRSA.

Soon after I started to lose muscles tone and fat in my upper body, I also lost my breasts, legs started to get bigger (puffy, fat?water? The weight lose is not significant 5 kg, but my body shape changed completely. I was always fit, but never bony, skinny, I had very lean long legs like a model with wide shoulders and big breasts.(hourglass body shape) I gain weight always in my upper body, above waist never in thighs and legs. Now is vice versa and I look very unattractive with bonny upper body,without breasts and my shoulders are narrower than hips, legs and thighs look swollen and puffy. I liked to swim a lot, now I can’t anymore so my muscles athropied even more.

Yes the tic bite preceded the inflammation of hand and I had some kind of bowel inflammation (bloating, abdominal pain,diarrhea) Chron’s disease was suspected but all the tests, colonoscopy, gastroscopy were negative. They said that the colon wall was a litlle bit inflammed but nothing significant.

I have never been diagnosed with psoriasis,
I had never ever had any skin problems before.

I have received another bad news, my neurologist appointment was rescheduled for a month. Another month of agony.

Please give me some advice.

Stay cool,

Frankie

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Frankie , aspirin works the best for EM , Tramadol is also good. You are describing severe sciatica and or neuropathy, Imipramine is a tricyclic sera tonal acting drug which helps EM neuropathic pain . Avoid heat , wear loose clothes , go barefoot. These things help me with my struggle with EM. Avoid ice !