Does this sound like PEM? Possible CFS after Glandular Fever
Posted , 5 users are following.
Hey everyone,
I am a twenty three year old woman. I became ill with GF on Christmas Day 2016, and was diagnosed with Glandular Fever in January 2017. So I am in my tenth month of the illness. Originally, I was told I would recover in three to six months, and so I continued working fulltime as a graphic designer throughout my illness. However I lost my job last September, and have had to move back in with my parents. Over the last two months, my main symptoms have been pins&needles / tingling all over my body, swollen glands, headaches and fatigue. I have been to two doctors since September, the female doctor believes I have CFS, as I failed to recover in six months, while my own GP (who originally diagnosed my GF) still thinks it's normal for me to be ill. I haven't been bed bound at any point in my illness, and was able to live independently. However I haven't been well enough to socialize / have a life outside work. (When I was working.)
I have been trying to be optimistic about a complete recovery, but I am really starting to wonder if I have CFS. My boyfriend has been really supportive, and suggested we go on holiday to London to lift my spirits. While I managed OK the first three days of our trip (with breaks/rest)for the last day and a half I have had a burning sore throat and extra exhaustion on top of my usual symptoms. I hadn't had a sore throat like this for a month or two, so I was starting to hope that my condition is improving. I had hoped that this trip would mark a milestone in my recovery, and help reassure myself that I have improved. Instead I feel anxious that this latest symptom relapse fits the hallmark PEM associated with CFS.
I am sorry for the wall of text. Some input from people suffering from mild/moderate CFS would be really appreciated.
0 likes, 5 replies
jackie00198 sickanon2
Posted
Hi--So sorry you're having these problems. One pathway to ME/CFS does seem to be through glandular fever. It sounds very much like your situation has morphed into ME/CFS. Even so, you're young, and can recover. The most important thing is to take it real easy, pace yourself, and don't try to push through the fatigue. This can result in a crash. Some doctors feel that crashes can actually worsen chances for a recovery. By the way, I also have that pins/needles tingling. It's definitely part of my ME/CFS.
Fidd sickanon2
Posted
Most of those in your situation will just naturally go on to naturally recover, but a significant portion of those who have been ill this long after glandular fever do not, and end up being classed as suffering from CFS. We don't really know why this is, or have any knowledge about what can be done to help - there's just very little good research to help make informed decisions. Probably all you can do for yourself is to hope for the best, and try to have no too bad a time.
?In the UK, doctors can be pretty terrible with CFS I'm afraid. They're often heavily influenced by years of spun junk-science, exemplified by the PACE trial. A New York Times piece titled 'Getting It Wrong on Chronic Fatigue Syndrome' may be of interest.
Good luck with it all.
janet71271 sickanon2
Posted
Hi sorry to hear you are still feeling uimproveiI have had moderate to severe me/CFS for 21 years . I have the pins and needles /tingling too. And a list of the other horrible things.
Glandular fever symptoms can linger for months. Varies in the individual. The virus never leaves your body. It lies dormant even in people who fully recover. It won't have helped you carrying on working through your illness really. Your body needed more restful activity to aid recovery. Now you are not working and still feeling so terrible, try to allow yourself more rest. As already advised, pace yourself and don't overdo things. I don't mean bed rest, but do avoid exerting yourself to much and avoid stress. Hopefully you will start to feel better before too long. About 10% of people with glandular fever go on to have CFS . you might have it but you might just be taking longer to recover from the GF and have a post viral fatigue syndrome rather than full blown chronic fatigue syndrome.. I hope it is the latter and you improve. There is no specific test for CFS and is generally termed when most other things have been eliminated . there is a list of symptoms of which at last six should have been present for at least six months. The list includes the symptoms you have , but they are also the symptoms of GF . so i'm afraid it will be a case of taking each day at a time and see what transpires . Take good care x
sickanon2
Posted
Right now, my own GP is continuing to treat it as temporary Post Viral Fatigue after acute Glandular Fever. However, I fear that continuing to work after my diagnosis has sabotaged my chances of making a full recovery. If I had realised how serious the effects and potential consequences of GF when I first became ill, I would have given up my job immediately. I'm frightened because I don't know for definite what's wrong with me. How long do I have to be ill, before I'm forced to seriously consider pursuing a CFS diagnosis? I will be ill a whole year by Christmas, which is only two months away. I'm frightened and I don't know what I should do.
janet71271 sickanon2
Posted
My CFS/me was diagnosed about 10 months after I first started to be unwell. Winter vomiting followed by four throat and chest infections over a few months. I carried on working too which was not ideal considering I was a nurse on a paediatric Respiratory unit !most of the staff had the same infections . must have been viral as antibiotics helped non of us. All the others recovered but my health just deteriorated until I just about collapsed at work one day. I went off sick and tried three times to return to work but it was impossible . I asked to be referred to someone as gp was doing nothing . saw a fabulous endocrinologist who had a special interest in ME. He had many patients with it . various things were eliminated through blood tests and MRI scan etc. Apart from a few odd blood results nothing major was evident and I was told I had ME. Which not long after they have to call it CFS .
Usually a diagnosis of CFS is made after six months of having continual symptoms . I am not really sure when it follows glandular fever as that can be so debilitating within itself. And take months to subside in some people. Because you have been so unwell for so long now , it likely does suggest you may have CFS. But it isn't my place to confirm that or anything ! Just advising from my own experience .
I think the best thing is to keep pushing your doctors if you continue not to improve . above all be kind to yourself and take things steady. Take care x