Possible CFS/ME after acute Glandular Fever?
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I have been ill for the last nine months since being diagnosed with Glandular Fever. Originally, I was told I would recover within six months, and foolishly I continued working fulltime even after my diagnosis. Eventually, I lost my job, and thus my dream of being a graphic designer, due to my illness. Since my diagnosis, my health has deteriorated rather than improved. I live with chronic fatigue, painful pins and needles / prickly feeling all over my body, headaches, muscular pain, swollen glands, and sore throat. I am in constant pain. Recently, I did another mono-spot test which came back negative, and I have been diagnosed with Post Viral Fatigue Syndrome. In my efforts to find answers as to why I have failed to recover, I discovered in my online searching that there is a strong link between Glandular Fever and CFS/ME. I was wondering if there's a possibility the virus has led to me developing a chronic illness? And how might I go about getting diagnosised? My GP is currently refusing to entertain a rediagnosis, and inisists that my primary diagnosis is still Glandular Fever / Post Viral Fatigue. I'm terrified and I Don know what to do.
0 likes, 14 replies
elaine62759 sickanon2
Posted
I had glandular fever too and stupidly tried to carry on working and it developed into ME/CFS. Post Viral Fatigue Syndrome is another name doctors often give the condition. I was later told that when you have glandular fever a lot of your chance of recovery depends on what you do in the early stages of the illness. I also wonder if I hadn't pushed myself to keep working and rested more initially if I would have recovered better. I know someone else who also had glandular fever but had a very understanding workplace who allowed her to stay off work for 2 years and she rested much more and paid someone to clean her house and do her ironing and she only went onto to develop mild CFS and is now more or less normal. There is definitely a link between glandular fever and ME/CFS.
?I've now had ME for over 20 years but when I was first ill there was very little help available. I also felt I was getting worse rather than better until I eventually got some help and changed my lifestyle. The things I've found most helpful are pacing myself, avoiding stress, CBT, healthy diet, guided meditations and gentle yoga when my body allows it. You could maybe see if there are any local ME/CFS groups in your area to give you some guidance. A couple of really good books which might help you are Better Recovery From Viral Illness by Dr Darrel Ho-Yen (recommended by my GP) and Fighting Fatigue by Sue Pemberton and Catherine Berry.
?Try to look on this as an opportunity to take time out for yourself and see what improvements you can make in your life which might help. Listen to your body and don't give up hope as some people can see an improvement and are able to manage their symptoms.
sickanon2 elaine62759
Posted
elaine62759 sickanon2
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Your are still in the early stages of the illness so don't panic that you will never get better. It was wrong of the doctor who diagnosed you with glandular fever to tell you that you would recover within 6 months. Glandular fever is an unpredictable illness. Some people can recover within a year, some people take a little longer or with some it can develop into a long term post viral fatigue illness.
?As you kept working you have not yet given your body a proper chance to recover. If you try resting as much as possible with gentle activity and good food you body might start to recover. You could maybe try walking as an activity to try and maintain some fitness. Start off small distances and very slowly build up.
?I was off work initially when I had glandular fever but was pressurised into returning to work too soon or I would lose my job. I struggled with this for about 10 years. I used every bit of energy going to work and straight to bed when I got home. Then I had loads of bad relapses and was off work for months mostly in bed. Looking back I never gave my body a chance to recover at all.
?This doesn't mean the same thing will happen to you. It might not seem like it to you just now but it's a good thing that you lost your job just now. It gives you an opportunity to try and recover and hopefully you will be well enough to work again at some point in the future. You could even try some voluntary work if you start to improve or try working part time to start with. Or you could study to try a different career or work from home. There are lots of options for you.
?Treat yourself as you would if you had the flu - lots of rest and good nutrition and hopefully you'll start to see some improvement.
jackie00198 sickanon2
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I believe that, yes, there is a strong link between Glandular Fever and CFS/ME. I've read numerous posts about such a link on this forum. Also, Post Viral Fatigue Syndrome is often used as just another name for ME/CFS. This was the case for me when I was diagnosed. Although there may well be such a link, and even though you overdid it, doesn't mean you're "doomed" to live with ME/CFS the rest of your life. Especially since you've only had the illness for nine months (yes, I know nine months is still a long time), To optimize your chance for a recovery, it's very important to get plenty of rest and not to push outside your energy envelope. Crashes may get in the way of a recovery. It's best to prevent them, if possible. I know that can be hard. Try to pace yourself. Some people find that a Fitbit helps, and they keep extremely close track of stuff like steps walked in a day. Regarding diagnosis--where do you live? I know of some top doctors in the U.S. An appropriate specialist with a knowledge of ME/CFS can diagnose you (although if you've already been diagnosed with Post Viral Fatigue Syndrome, that may say it all). An infectious disease doctor might be able to help you. Right now, there's no cure for ME/CFS, but sometimes symptoms can be improved. Also, subsets of people do get better with certain drugs, like antivirals (Google Dr. Jose Montoya) or Low Dose Naltrexone. Go to the "solve me/cfs initiative website" to get information. Google "humans of me/CFS" to read stories of other people with this illness. Also, there's many informative and moving videos on YouTube. You are not alone. There's millions worldwide who are suffering with this illness. There's also a lot of good research happening now, by some extremely bright scientists, so there is hope fore a cure.
sickanon2
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Thank you for your messages. Unfortunately I live in Ireland, and there are no dedicated CFS/ME specialists here. There's little awareness or support for sufferers in my country. But it still might be helpful for me to look at the online reasources now that I am unemployed have the time. I recognize that perhaps me losing my job and being forced to move back home may be a good thing in the conext of this illness. However, I'm afraid that it's "too little too late" and that I may have sabotaged my chances of making a full recovery. (Evidenced by the fact that I have been diagnosed with post viral symptoms.) That said, I am going to take it easy now, and not do any further damage if I can. I am also going to another doctor next week to discuss my situation. I'm hoping she might be able to shed some light on whether my illness is likely to be chronic or not. And offer me some insight into dealing with my symptoms. (Particularly the pins and needles / tingling worries me a lot. ) I know nine months may not sound long, but I am only twenty three, and I never envisioned losing my health at this age when I was perfectly healthy previously.
jackie00198 sickanon2
Posted
Regarding your pins and needles symptom. I developed this same symptom after my relapse. From what my doctor said (he's a major researcher in the U.S.), I think it's due to the small nerve cells in the brain being affected. When I developed this symptom, I had a nerve-conduction test, which showed nothing. Again, this is because, I believe, the symptom originates in the brain. I, too, was worried and scared when this symptom started. But it has abated a bit now, and I just try to ignore it. It's good that you're seeing another doctor to discuss your situation. But no one can project the future of your illness. To maximize chances for the illness improving, the best thing to do is rest and pace yourself. I know I'm sounding like a broken record, but I wish someone had told me that when I first became ill. It's very simple, yet powerful, advice, and I believe could have changed the course of my illness.
elaine62759 sickanon2
Posted
I get the tingling/pins and needles too and also numbness in one side of my face, down one arm and leg. This seems to appear when I'm feeling worse and go away on my better days. I now see this as my body's way of telling me I'm doing too much and make myself reduce what I'm doing until it goes away. I was told by one doctor that it could be a sign of some nerve damage caused by the initial glandular fever virus. Moving home could be the best thing for you at the moment and might be just what you need to give you a chance to recover. I really hope that the new doctor you see will be able to give you some more advice and support.
ren31 sickanon2
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hi i was wondering how are you going now? I'm in need of some encouragement.. I'm also struggling with my doctor's even acknowledging that glandular fever can last this long and cause these symptoms.
kind regards
Ren
sickanon2
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What you guys are saying makes a frightening amount of sense. If I have brain damage or nerve damage, than that means I'm going to be stuck with the pins and needles / tingling pain for the rest of my life aren't I? You can't fix people once they suffer brain damage. I will follow your advice about resting, but it seems like any hope of making a full recovery is lost. The best I can hope for is an improvement, but I will never have a healthy pain free body again if what you guys are telling me true. I will put this to my doctor next week.
jackie00198 sickanon2
Posted
I can see where you're going with this (into a very fearful place—I know, because I’ve been there). Please read my post again. I said: "due to the small nerve cells in the brain being affected." Notice I didn't say "damaged." My doctor (again, a very well-respected doctor and researcher here in the U.S.) thinks that the nerves are NOT damaged, and that the effect of the illness on the nerve cells in the brain CAN be reversed. He contrasted this with MS, where nerves are indeed damaged, and damage is irreversible. If you read Elaine's post carefully, she says of her pins and needles symptom: "This seems to appear when I'm feeling worse and go away on better days." If nerves were permanently damaged, I think she (and I) would have constant nerve symptoms. All this information need not be frightening, but hopeful. You absolutely can make a full recovery!!! You're young, and with rest and pacing, you can get better. I don’t want to minimize your fear here. All these symptoms can be very scary, and this illness is the pits. But you can get better, and I hope it is that message that you’ll take away from this post.
sickanon2 jackie00198
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Sorry I did get very panicky there, I'll read your posts with a cool head. Thank you both for taking the time to reply. I guess I'm dealing with a lot of fear around this situation. I'll try and rest and relax now that I'm in a position to do so. I guess all I can do is take it easy and hope for the best. I'll put all this to the doctor too, hopefully she'll be able to give me some practical advice about how to approach this illness over the next few months.
sickanon2
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Thank you for your help by the way, even though it's bad news, I need to know what the reality of my illness is.
sickanon2
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elaine62759 sickanon2
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Sorry to hear of your diagnosis but it doesn't mean that all hope is lost. Some people can recover from CFS or can lead a decent quality of life by managing the symptoms. Try and find out as much as you can about the illness. There are lots of things you can try to help yourself. When I lost my job I was practically bed bound and hardly able to walk more than a few steps but now on a good day I can walk for about an hour with my dog and can still go places some of the time. It's all about working with your body and not pushing yourself over your limit. There is lots of great advice on this forum. Try having a read through some of the older replies on here and see if you can relate any of them. You will see that some people have seen an improvement in their condition so don't give up hope. Keeping a diary can be really helpful so you can see which things make you feel more tired or give you energy. If you are feeling depressed by the diagnosis it might be worth considering counselling or CBT. Try and focus on what you can do rather than what you can't and don't give up hope. xxx