Please, I do not know what to do!

[JILLSHYE]

Quick story: New symptoms started 6 days ago which is burning soles of feet and hands which spread to whole body. Feeling like I have a massive sun burn on my entire body. Also, left side weakness, eye pain and major leg cramping.

Was told to to to ER admitted and given 2 doses IV Solumedrol before they discovered I had UTI. stopped IV and discharged with antibiotic and told to increase Neurontin for pain.

I am sooooo sick and in massive pain. This sun burn pain hurts really bad and something I have never had before. I have tried everything and nothing works. My other Ms symptoms have magnified as well.

here lies my dilemma.
1- suffer until UTI clears
2- go back to ER and beg for relief only to be sent home because this is not a relapse despite new very painful symptoms.
3-OD on Vicodin and pickle my liver because the pain is unbearable.

it even hurts to sit on my bottom or lay in bed because of the sun burn pain. I have no fever but man I am burning up.

I do not know how to help myself and really could use some advice right now

[BigA]

Have you called your clinic? Usually, the practical nurse there knows best what to do. Also, did the steroids give you any relief? Are the antibiotics helping?

You should just keep calling your Neuro if you're still unhappy with your treatment.

[rdmc]

So sorry you're having to go through the body burn. I've had it and all you can think about is relief.

Put a call into your neuro, describe your pain, there are meds for neurogenic pain. Some are anti-epileptics like Tegretol and Neurontin, and there are others like Lyrica and Amitriptyline. The truth is they don't work like normal pain pills and take away the pain from the first dose, sometimes you have to start low dose and ramp up for them to be effective.

Now in the meantime, what can you do to maintain your sanity. Here are a couple things I've done, and do (although my feet and calves are where the pain seems to have settled) but I have had the all over burn.

1. Get into loose clothes, not sure why that helps, but it helps me, probably because anything touching the skin can bring on pain.

2. Try ice packs...for me this really distracts me from the pain. I take two or three ice packs and move them around to areas that are driving me crazy.

3. I use lidocaine cream (you can buy it in the drug store) and it numbs your skin. I usually only use that on areas that are seem the worst...it's pricey and I use it sparingly.

4. There are also people that claim that Capsaicin (sp?) cream or roll on rub helps with the pain. It's made from hot peppers, and I did use it once when I had neurogenic pain in my face. If I remember correctly, it did help some. You'd just have to experiment, you can buy it at any drugstore.

5. Ask your doctor for regular pain pills to try (like Vicodin) until the burning subsides (hopefully it's just from a flare caused by the UTI.) Regular pain pills aren't supposed to do much for neuropathic pain, but I've read on this board that there are people who get relief from this pain with regular pain meds.

Let's just hope all this was brought on by the UTI and as it begins to clear up, the burning will subside. In the future, when you start to have symptoms, have them check for a UTI first thing. Many of us don't have the "normal" symptoms of a UTI, and a UTI can really cause symptoms to flare, or send you into an exacerbation. I keep urinary test strips on hand, and when things start acting up with my MS, the first thing I do is to check for a UTI myself. (you can buy these strips in the drugstore for about $10, but you only get 3.) I buy mine at amazon.com and they're about $16 for 100 and have a year's shelf life.

Hope you start to feel better soon, usually when the UTI starts to get under control, the symptoms will subside...that's why they call them pseudoexacerbations.

Hang in there.

[MrsJohnson]

Having been through something similiar, I can give you my ideas.

It is probably a new symptom brought on by the flare. But was made worse when the High dose medrol was brought in.
I have had this happen. I have had a low grade bladder infection for awhile and no one caught it. This has made this body burning and itching a lot worse.

Don't take any warm baths.. (heat sensitive) will make it worse..
You might try going back to ER and ask them if they could start you on something for nerve pain.
There are quite a few things I.E Lyrica, Cymbalta.. a few of the seizure meds.. none of them work fast.
But it is a place to start.
Something to take for anxiety in the mean time and to help you sleep is something else you could ask for.
I take Cymbalta I started at 30 and in a week went up 60mg's I take that daily. It has been a blessing.
I also take Klonopin 1 mg at night to sleep.
Tysabri and Cymbalta keep me up.

The faster you can get control of the infection the better. Drink a lot of water 8 - 8 oz glasses a day if you can.
You could try going back and asking for an injection of antibiotics to speed the infection on its way out. It might help I don't know.
Good luck.. with time and trial and error I believe this can be livable.

[MyGirlsMom]

I don't have any solutions nor have i experienced the dreadful pain that you are going through, but I just wanted you to know I am thinking of you and praying for relief and comfort. You are so strong and brave!

Please do try some of the suggestions above....the benzos (xanax, klonopin, etc) have really helped me with neuro pain. Hugs to you and I hope tomorrow is a better day!