Why did cortisone shot make me so much worse?

Discussion in 'Fibromyalgia Main Forum' started by klutzo, Aug 6, 2003.

  1. klutzo

    klutzo New Member

    Madwolf, Sujay, or anyone else who cares to speculate:

    Saturday afternoon, I was bitten by fire ants and had an allergic reaction. In the emergency room, I was given 125 mgs. Solu-Medrol by injection into an IV. It stopped the reaction, but....

    Since then, all the symptoms I have been complaining about on this Board and attributing to adrenal fatigue (or hormones, or low neurotransmitter levels) have been ten times worse. I feel this is significant, since it is those specific symptoms I've complained about and only those symptoms, that have gotten dramatically worse since the shot.
    The slightest noise makes me jump a foot. When the cat jumped in my lap, I reacted and threw him across the room. In traffic I cringe and gasp and get tachycardia from every movement of other cars. I am so angry I could take a machine gun and go on a killing spree, and then go out to lunch afterwards. The little things about my husband and even my pets that are irritating but usually ignored, now seem huge and intolerable. I can't sleep, even with extra medication. I am so hungry I could eat a horse with sugar on top (literally). I feel nauseated.

    This has not happened before when I have had allergic problems that required cortisone. Can anyone explain why or how this could happen? I feel very strongly that this is a big clue to what is wrong with me lately. Wouldn't I feel better after this shot if my cortisol output was too low and my adrenals were fatigued? I am very confused.

    Thanks in advance for any advice,
    Klutzo
  2. Kim

    Kim New Member

    All I know is what I went through. My cortisol level got too high from long-term anxiety and I had all the symptoms you're describing. It was clinical depression. I fought that diagnosis because CFID/FM seemed to be a better explanation of what I was going through. I just didn't recognize the depression creeping in and making things much worse than the chronic fatigue. This is simplistic, I know. I was so far gone by the time I admitted that I might be depressed that I had to have shock therapy. After the shock therapy I was 90% better from the FM symptoms. The acid reflux, tacycardia, and anxiety left immediately. The nausea left immediately. The agitation and fear left.

    I'm not suggesting ECT. I just know that measuring cortisol and getting cortisone can be tricky.

    Everything seemed too much for me to deal with, even taking a shower. I was mad at the world, scared, and anxious.

    AFter the ECT my cortisol level was normal. I think cortisol needs to be measured several times a day for several days to get an accurate picture but how do you do that? I'm so convinced that CF/FM is a neurotransmitter disease because I'm in a depression relapse and my neck and back hurt so much, my jaw aches, and my face is numb.

    I hope and pray you find answers and relief.

    kim

  3. JP

    JP New Member

    I am so sorry you are having such a horrible reaction. I have trouble with cortisone shots as well. I am so tired today that speculation would be an empty effort. However, cortisone increases my anxiety related symptoms, which are many. I hope you get some relief soon and discover what is causing you distress.

    Take care,
    Jan
  4. tansy

    tansy New Member

    and low and behold it's prednisolone. I was given this years ago when they thought I had SLE. It was a total disaster for me and I have always felt my problems with that were one of the keys to what was going wrong.

    It's also why I kept being so anti hydrocortisone because I never want to go through what predisolone did until I got to very low doses.

    I felt as though I'd been hit by a truck, my head was so bad I could neither lie down nor be upright, and experienced a very marked buzzed fatigue. I felt absolutely dreadful. Stupid thing was I'd been readmitted after a traumatic lumbar puncture, being stuck with my head at 45 degrees made the pain etc so much worse. Only good thing was less stiff joints, sorted that later when tested properly for food intolerances. It also left me with far worse candida and feeling even more like I had an ongoing infection.

    So I will be checking this post from time to time because I too want to see what explanations others come up with.

    Sorry it's still all so bad, really seems to have triggered something. Do hope it start to dissipate soon.

    Love

    Tansy
    [This Message was Edited on 08/06/2003]
    [This Message was Edited on 08/06/2003]
  5. klutzo

    klutzo New Member

    I am so glad you got the help you needed. This fits with the neurotransmitter program I am starting.
    I have had salivary cortisol done at four different times of day and it was all normal. My morning blood cortisol was also normal, but I am planning to do that test again once this shot wears off.
    I do have two of the major signs of extreme stress and high cortisol levels: 1) low salivary sIGA levels, and 2) a "swallowed a beach ball" tummy. Over the past couple of years, I have gained 9 inches on my waist without gaining a pound. I have read this can be caused by too much cortisol release due to stress.
    I do not know what the solution is, since I got no help from anti-depressants and am no longer willing to take them, knowing what I now know about how they work.
    I am stuck in a Catch-22 situation in my life which could cause stress and don't know how to get out of it. I will certainly bring this up with my doctor.
    Are you taking anything now, or did the ECT fix you completely?
    Thanks for your input,
    Klutzo
    [This Message was Edited on 08/06/2003]
  6. klutzo

    klutzo New Member

    I guess misery does love company, because while I am very sorry for your having had problems with this also, I am glad to know I am not the only one having these problems with it.
    Klutzo
  7. Hinemoa

    Hinemoa New Member

    but now a tiny dab will break me out in a firey itching rash that can travel over large portions of my body...and lasts for two weeks.

    Allergies can develop after some time. My doctor said that cortisone is not usually recommended for CFS patients, I'm not sure about FMS but I'm now fairly convinced that they're two sides of the same disease and the above info probably applies to both. I imagine that the proviso was due to the fact that the immune system is depressed by cortisone.

    I have read...and heard from my Dr. that Plaquenil is a resonable substitute. That's what I'll use when I need it next.

    Good luck,

    S.
  8. ckball

    ckball New Member

    YOu just described my everyday for the past 4 months, lol I have been having a lot brain function problems, sit here and stare at my keyboard looking for that word I wanted to use and just couldn't get it. Anyway, I hope you get past this when it is out of your system. I am the same with the noise, everytime the phone rings, car goes by I juump and I HATE Walmart because they are constantly talking over the loud speaker. It makes my skin want to crawl,lol. Good luck, CK
  9. sujay

    sujay New Member

    I'm afraid I have no words of wisdon to impart. So much depends on everything else going on in your body at the same time. I suspect high cortisol levels increase your ability to coagulate blood, you may have reached a critical point in your illness where you react. Many of my patients have symtoms increase after a cross-country flight, which I presume is due to hypercoagulation triggered by the low oxygen pressure. (Jelly's got some interesting posts on oxygen, but I haven't read them all yet. That girl is just like the elephant's child with her 'satiable curtiosity). It's not uncommon for patients to become psychotic while on prednisone, so nothing surprises me. I hope you're getting over the worst of your symptoms by now. You should be cautious about taking prednisone again, but sometimes we don't have a lot of other choices. Stay away from those fire ants!

    Wishing you well,
    Sujay
  10. darlamk

    darlamk New Member

    Through the years I have had a lot of steroid injections for the multiple orthopedic problems I've had. I have noticed that after the last 2 (which were spaced months apart)I had a really big increase in all my FM symptoms too and felt lousy! I think the irritablity, hunger and sleep problems are classic with the use of steroids but I used to have a burst of energy from the injections but did not experience this after the last 2 doses. I vowed to stay away from the stuff as much as possible but sometimes it is unavoidable as in your case. Wow! I bet those ant bites were nasty! Good luck in your quest for answers.
    Take care
    Darla
  11. klutzo

    klutzo New Member

    They said I can have the fasting 8 am cortisol done any time, and the shot will not affect it! I am surprised at that, but if they will call me back today and give me the ICD code for the test, I can go get it done tomorrow morning.
    My level of 18 was four yrs. ago, and at that same time my ASI was showing stage 3 adrenal failure.
    Now my ASI is normal, so it will be interesting to see if my cortisol is higher. I need this test to confirm that it is indeed neurotransmitters, not cortisol that I need. Like Madwolf says, I don't want to waste a lot of time and end up needing cortisol anyway.
    I bought Jarrow Whey today and will start it tomorrow. It has some tyrosine and tryptophan in it, so maybe it will help a bit, since I can't tolerate 5-HTP.
    All symptoms are slowly getting better now except the nastiness.
    Thanks for all the support!
    Klutzo
  12. klutzo

    klutzo New Member

    That is truly awful....beats my story! This is not a contest though, and I wish none of us had to go through this crud. I am glad you feel better now.
    Klutzo
  13. klutzo

    klutzo New Member

    I would just tell the doctor exactly what happened after that second shot, and ask politely (have to stroke their egos ya know!) if you might have an 8 am fasting cortisol blood test, to see if there may be an adrenal problem.
    If he/she resists, you might also mention that several medical personell who come to this Board are getting excellent results with low dose Cortef, and that most of them had their levels checked first, only to find they were very abnormal.
    If you have a conventional doctor, you may get a total brush off on this, but you can try.
    Klutzo
  14. BonBons

    BonBons New Member

    I've been MIA - real flare-ups and I'm working some again. However, one office I worked in made me literally vomit from the stress and a migraine. I definitely have had a beach ball tummy on stick legs for several years now and also have IBS. I also have pelvic pain from adhesions from endometriosis (2 surgeries). I am on the Medrol prednisone pack right now (1st day; can you tell by the hour? usually I'm asleep at this time and many other times). I hate these steroids too and have been on them many other times for severe sinus infections, but I am feeling okay about getting over the hump right now with it because I'm desperate again. We filed bankruptcy and still don't know how we will manage the day to day expenses. Love to all, love is all there is. This post sounds so gloomy but it's the prednisone talking, not me. I'm a survivor, and so are all of you......BonBons
  15. klutzo

    klutzo New Member

    So sorry to hear of your financial troubles. This DD certainly is the gift that keeps on giving (NOT!) Glad you are back and philosophical about having to take the Prednisone. I hope it does the trick for you.
    Klutzo
  16. BonBons

    BonBons New Member

    Klutzo - I am amazed at the variety of insects I have to work at keeping out of our home and yard here. I live in the jungle, I realized. Those fire ants are mean MFrs; have heard tales about dogs dying and people being forced to move. Have you ever seen the Hellstrom Chronicles? I believe it - those insects will be the last living creatures. I wish some biologist would discover a cure from one of the pests. Take care, sorry to hear about your distress. I have a palm tree sliver in my hand now that has made a lasting scar since I could never get it out, and the doctor said just leave it in. What a wild place Florida is, but I'm getting used to it (after killing about 5 underground wasp nests this week, Leonard (our dog) and I tread very carefully outside our house!! Love, BonBons
  17. klutzo

    klutzo New Member

    So true, Bon Bons. I think if most people knew about Palmetto Bugs before they move here, they wouldn't move here. Not to mention all the other things, as you said.
    Last night, I got out of the shower, grabbed my towel off the rack and started drying, felt a tickle, and looked down and shrieked. A Palmetto bug had been hiding in my towel and was now crawling up my leg. I use those extra large roach motels faithfully, otherwise we are overrun with them, but a few always get through, esp. when it's raining this much, and they fly in every time you open the door, in order to escape the rain. We live in a heavily wooded neighborhood, and I have found them in my purse, in my nightstand drawer, on my face at night sucking the moisture from my lip, and even woke up once to find one crawling up the crack in my posterior end.
    For those of you who are Yankees reading this and thinking I must be a real dirt ball, I keep a very clean home. Some people even think I'm compuslive about it (Shirl would understand). Palmetto Bugs (aka the American Cockroach) are not dependent upon crumbs and dirt left around like the tiny German cockroaches you have up north. They do just fine eating dead skin, toilet paper, paper bags, paper towels, kleenex, envelopes, etc. and the numerous smaller bugs Florida has in plentitude.Luckily, most of us have tiny lizards that get in our houses as well, and they eat the Palmetto Bugs, so I love them.
    This post should keep a few people from moving here! We have way too many people in this state already.
    Please watch out for the underground wasps. My husband has been stung twice mowing the lawn,and the second time they stung him in 4 places before he could get away. If that had been me, I'd be dead, which is why I don't mow the lawn.
    Klutzo
    P.S. You forgot to mention the Buffo Toads, which can kill a dog with one bite. We don't have them this far north yet, and I hope you are not in Southeast Florida where they are all over the place. I too, watch my dogs carefully, but they are so curious, it's hard to protect them.
    [This Message was Edited on 08/10/2003]
  18. klutzo

    klutzo New Member

    Yep, sand fleas bites HURT! Thanks for the info on how strong this stuff is, that may help explain my continuing rage and depression. I am finally starting to get some sleep.
    We used to have something here that really worked too, called chlordane, but they took it off the market also. I am afraid of those chemicals since I am so sensitive, so I use the motels. They outgas, but not much, and I never put them under beds or chairs we often sit in. The motels do work, it's just that Palmetto Bugs are not afraid of people, and they fly. I have seen one on the 14th story of a condo!
    Aren't you glad you don't live in the southeast any more?
    Klutzo
  19. tansy

    tansy New Member

    I'm now on 2.5mg am and noon and so far so good. None of the bad effects of prednisolone and I've slept better the last 2 nights than I have for ages, not great but good for me. Amazing since we're having a heat wave and humidity here.

    Will up am dose to 5mg, see how that goes and if I feel I need it increase the noon one too.

    I see this as a temporary med until other contributing factors have been dealt with.

    Feel more awake and alive before 5pm and my appetite has increased too.

    I'm so glad Madwolf and Pinkquartz encouraged me to look into this and get my GP to RX for me. Even if she only agrees to one month it has definitely made a difference which indicates to me what problems I need to address.

    The reason for my post. Just to confirm what Madwolf told you, Hydrocortisone is nothing like prednisolone in high doses.

    Love

    Tansy
    [This Message was Edited on 08/10/2003]
  20. klutzo

    klutzo New Member

    I am glad you are sleeping better. I read somewhere that most of us with FMS/CFS have a spurt of too much cortisol in the evening, and that is what keeps us awake. For some reason, taking extra in the morning re-sets the proper rhythm, and puts a stop to that evening spurt. This spurt is not even picked up on an ASI test, since they test at 4 pm and midnight, and the spike of cortisol takes place between 6 and 10 pm. I can't remember the name of the doctor who wrote the piece...his first name was Edward...fibro fog strikes again!
    One thing I do not want though is an increased appetite! I already have a ravenous one, and have gained 11 lbs. since I started taking progesterone drops. I am glad that is a good side-effect for you, but it sure wouldn't be for me.
    Keep us posted on your progress,
    Klutzo

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