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Do steroids help CFS?

Posted , 14 users are following.

onebratt08
onebratt08

Before I get into my question, some background (skip to the bottom if you want to get to the question):

Have had a mysterious illness for the past 4-5 years. Seemed to really kick off with an injury from working out - arms swelled so much that I couldn't bend them, doc gave me a short course of prednisone to help with the swelling, diagnosed as tendinitis and later after not healing suspected it to be from a neck injury. PT helped, but the problem never went away fully. Neck didn't show anything of great concern - just the normal wear and tear. After the injury and lots of rest, I could never return to working out with weights. Weights cause me way too much pain in the traps and neck. Even some cardio would cause the pain. I also felt hormonally off and GYN at the time refused to test me. I was eating a Paleo diet and seemed to be doing well on it.

The next year, I sought help from an alternative medicine nutritionist. I still had the pain and additionally was suffering from insomnia. She had me do the saliva cortisol test, unfortunately in that same timeframe, my cat had a sudden and traumatic heart problem and I went through 5 weeks of couldn't let her out of my sight, 3 times a week vet visits, lots of medication. It was exhausting in itself. Of course, my saliva tests showed adrenal fatigue. The nutritionist put me on an extremely low carb diet. That made my insomnia worse and I parted ways with her.

I rested my adrenals as much as I could and saw an Integrative doctor, who checked my thyriod. It was a little slow, so I started treatment for hypothyroid, thinking we'd found the problem. No matter how much thyroid medicine I took, I only felt worse, so thyroid was ruled not to be the cause.

I went to another alternative med doc and he tested me for Lyme. The results were inconclusive, so we tried antibiotic therapy, about a year's worth in total. Still no improvment.

All this time, through all these other diagnosis, I was getting worse. About a year ago, I caught a flu or a stomach bug or maybe both. Stared with diarrhea, then I was ok for a week, then muscle aches, fever of 102, exhaustion. I was working part time then and I had to take 2 weeks off work because of this illness. I wasn't recovering from the new exhaustion I was experiencing and so I took a leave of abscence and later quit. It took me months to feel like I wasn't dying.

I finally went to a conventional doc. He's put me with a number of specialists and we've checked out a number of theories - more Lyme testing and antibiotics, nerve testing, basic testing for autoimmune diseases (ANA, Sed Rate, CRP, RF), full endocrinology work-up, consult with a hematologist for Hemochromatosis, consult with cardiologist for POTS or other form of dysautonomia, consult with Gastrointestinal doc for upcoming endoscopy. On paper, I look extremely healthy! But I feel like crap.

My symptoms (probably too many to remember fully), some are constant and the others come and go:

Fatigue (currently on midodrine, which helps)

Orthostatic intolerance (midodrine helps again)

Forgetfulness, trouble thinking

Sore mouth, throat, increased dantal problems

Sore, itchy, dry eyes (Schrimer's test was not bad enough to consider Sjogrens), puffy eyes

Pain in traps, neck

GI problems (heartburn, slightly elevated lipase but not pancreatitis, diarrhea or constipation)

Tendons that seem to be fragile

Easy to bruise, bruises don't go away

Electrolyte wasting (esp magnesium and potassium)

Bloating

Trouble sleeping

Extremely light periods, more like spotting sometimes, PMS

Hypoglycemia

I can do cardio exercise, provided I take lots of rest

Can only do a couple things a day, have to budget and pace my time

Odor/chemical sensitive

Light sensitive

Completely intolerant to alcohol, 1 sip and I will feel hungover

Post nasal drip, coughing

Right arm tremor

Restless legs

Recently, the doc tried a short 6-day course of steroids to calm the inflammation in my body. I felt quite a bit better, but once off them, I feel like crap again. I'm starting to think I have CFS or Multiple Chemical Sensitivity or both.

Finally to my question - do steroids help improve CFS symptoms?

0 likes, 13 replies

13 Replies

  • lynne69494
    lynne69494 onebratt08

    Posted

    l experience most  of the symptoms you list, but the main being the increasing tiredness over the last couple of years, really noticeable fatigue over last few month, now near housebound, l havent had the extensive testing youve had, sounds like youve a good doctor at least, but lve had basic blood tests and couple of scans, neg results really, bit low vit d, l also get headaches and aching with pins and needles down arms, occassional hand spasm, dont get arm tremor with it. A scope showed some gastritus put on omprazole which helped with the nausea and bloating. lve long standing allergic rhinitus, also, my main allergen seems to be formalin, which is in many products, in the air also.  l,m currently waiting to see rheumatologist as symptoms are  much like fibromyalgia, which is also linked to intersticial cystitus which l was diagnosed with years ago.  Fibro also closely linked to cfs, there,s a few obscure symptoms, such as keen sense of smell, maybe craving carbs or chocolate thirst.l also got tested for sjorgens, but your symptoms very typical of fibro cfs, many have both. You will find a lot of people on mbs with symptoms and waiting a long time for diagnoses, which seems to be fairly common with many immune conditions, cfs, fibro, lupus, ic.others l expect also..

    So like you and others still searching for diagnoses, but sure others with diagnoses of simular symptoms will reply, and probably explain about steroid use, l wondered about that one myself, but never read of anyone diagnosed being treated with them, but they will advice on other things on how to deal with it best way, theres also info on health unlocked site,   l,m older and still really hard to deal with, guessing your younger, harder still, but sure youll get advice support best wishes

     

  • jackie00198
    jackie00198 onebratt08

    Edited

    First of all, your symptoms sound spot-on for ME/CFS. Have no doctors actually mentioned this? Pretty incredible, yet typical, if they haven't. You need to see an ME/CFS specialist, preferably an infectious disease doctor or a rheumatologist. I've never heard of steroids helping ME/CFS, and they have a lot of bad side effects. I seem to remember that steroids can be hard on the adrenals, which are already severely compromised with this illness. So I would steer clear.
    • raymond88579
      raymond88579 jackie00198

      Posted

      I have chronice fatigue amontg other things, steroids are a lifesaver. They enable me to have a life. No the docs do not want me on them but there are lots of drugs that cause risk. The benefits outweigh the risks for me. I absolutley could not function if I did not have them

  • katrinablank
    katrinablank onebratt08

    Edited

    i felt awesome on steroids - dexamethasone/decadron - following brain tumor removal. (my docs have determined my brain tumor is unrelated to the fatigue i've been battling.) however, since the steroids helped immensely (crazy energy - yet also crazy insomnia), my rheumatologist had me meet with an allergist to see about trialing steroids to help with my CFS. my allergist insisted, absolutety not - the steroids would do far more damage than good in the long run.

    i should mention, i also have unexplained eosinophilia. we're still trying to figure out if there's a cause to explain my elevated EOS levels along with the fatigue that i've been battling since my return from uganda.

    • kurt36675
      kurt36675 katrinablank

      Posted

      Many doctors don't want to prescribe steroids for CFS, which is very unfortunate. I go to Mexico for my prednisone, 15 mg/day works great for me. No prescription needed there. I agree with the other comment about benefits outweighing the risk. Prednisone works better than Dex, with less insomnia.

  • marie09535
    marie09535 onebratt08

    Posted

    Short answer: Not really. I've had CFS for 20 years now, and a new GP thought I had something rheumatic as I had slightly elevated CRP and ESR last year. I was thrilled to try steroids. Nothing much happened at 30 mg but efter two weeks om 40 mgs I suddenly felt better than since I got sick. BUT it only lasted three weeks and now I have stuggled 10 months to come off them, and I'm even worse off than I was when I started (which was not good at all). Also the side effects are severe. Most of them go away as you taper, but one thing I had not read about are the ugly purple strech marks. I have them around the hips, on the inner thighs, in the arm pits and on the breasts. Makes me very grateful that I am not married.

    Take care now,

    Marie

  • bronwyn97278
    bronwyn97278 onebratt08

    Posted

    Hi Onebratt08; I can understand why you would ask this question, for I myself have often wondered same, as they treat Polymyalgia Rhuematica with Prednisone, and for quite some time, that is the only diagnosis I got.....Polymyalgia.  If we read on the treatment of this condition, as is also found on this site, then we can follow how these sufferers take their Prednisone, and how they Taper it down, according to their pain levels etc.    I feel that if I was offered a trial, and followed with all necessary blood functions , then I, too, would give it a go......................gosh, nothing else is "curing" us, and if we could control some of the pain and exhaustion....so be it.      I am also VERY pleased that another reply mentioned that this person knows the difference between Fibro, CFS and ME.....although from what I have read Fibro and CFS often go together, ME is something else again............thankyou, as I have previously had someone tell me this is not the case, and was "off the track"............good luck..................Bron
    • lynne69494
      lynne69494 bronwyn97278

      Posted

      I also asked the question about steroids, and l know they can have side affects, a common one being weight gain, also know that they only benafit for a limited time at dose prescribed, months or years, not sure which means upping the dose, so it goes on till top doseage and when that stops working its into decline.  But l do know some who use them for many years starting at very low dose, l know a common condition is chest problems, even some of asthma inhalers have tiny amounts in, then goes up for copd, often given after chest infections for those who have them regular, my sister in law gets several in winter, and has had course of predislone with anti bs for it. l had to have chemo in past and was given predislone following each course, 

      l would think there are other conditions where theyre used, maybe such as ms. l hope others post who are using them frequently or occassionally and for what condition. l have intersticial cystitus which is often linked to fibro sjorgens, but like cfs, me, lve never heard of anyone being treated with steroids. l think maybe its conditions that have the life threatening label with them, At my age l,d be prepared to trial, even if short courses, to see, as at present l feel my life is more an existence, l do my best and battle to keep depression at bay, which l do most of the time, and try to stay posative, but  due to age the hope of future cure is limited help  for me, l think anyone younger, be it worse in a way having it when young should keep hope that a cure will be found in a few years. l hope others reply with their experience of steroids, sorry yours was a bad one marie, also understand, although l envy those with a partner to help support, at times l feel in such a state l,m glad no one sees it up close and personal daily. l guess if my partner were still here he,d put up with it. Best wishes to all

  • susan_81083
    susan_81083 onebratt08

    Posted

    Sjogren's. Those that begin more neurological are often known to have less SICCA symptoms, and the illness can proceed SICCA by many years. Unfortunately we have a medical community out there unaware that it can look like this most of the time. Most have a light speckled ANA, and no antibodies.

  • kurt36675
    kurt36675 onebratt08

    Posted

    I suffer from CFS. I had severely debilitating fatigue for about four years starting at age 21. I had to quit school, and was stuck at home. I tried prednisone and it was amazing how well it worked. I have been taking 15 mg a day for 15 years. So far no noticeable side effects, Except for insomnia if I take it in the evening instead of in the morning. If I am under stress, I take extra, up to 30 or 40 mg a day. If I miss a day, I start to feel very unwell about 8 to 12 hours after I miss my dose. So, you have to be sure to take it with you if you go on a vacation or if you are in a new place. Prednisone has allowed me to return to work, to start an accounting practice, Which I run full-time Since 2010. It is absolutely amazing how much it helps. I would rather be dead than not on prednisone. The excessive worry about side effects is ridiculous. Who wants to live with the horrible condition of CFS? I can exercise, run, swim, do the normal things that I used to do, but I absolutely cannot do it if I am not taking prednisone. The positive benefits of prednisone for CFS shatter the concerns people have about side effects.

    • raymond88579
      raymond88579 kurt36675

      Posted

      that's great do the doctors at least your doctors talk to you about side effects, my doctors want to take me off of it I've been on there for 20 years and they're like no no more you cannot be on that and I'm like well what are the alternatives and they don't give me any. one Doctor ripped me off of it and I ended up in the hospital.. the benefits outweigh the risks I just wish I could convince some of that

  • raymond88579
    raymond88579 onebratt08

    Posted

    I have been on steroids for 20 years they originally thought I had lupus but I don't they've tried every test known to man for the most part all of my symptoms mimic yours plus a few others 20 mg of Prednisone do absolutely wonders for me I have a life now but they want to stop giving me it I have CFS really really bad very things but the steroids help a lot and there are lots of drugs out there that have risky side effects so I don't understand why prednisone is so up in arms about

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