Does this sound like CFS?

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Hi everyone,

I've been sick now for almost six months and have been struggling to find a diagnosis for what is wrong with me. I started with a mild to high fever back in the end of June after a stressful weekend of attending my sisters wedding and leaving for a job out of state the next day. The fever lasted for a week and I was completely wiped out for nearly a full month. I returned home after not being able to work and continued fighting with my mysterious illness. I had severe fatigue, had a stuffy nose, foggy memory (the fever would sometimes come back in a mild form). I went to multiple doctors who ended up putting me on three antibiotics with no effects other than making my stomach feel awful. I've been to an ENT doctor who doesn't think it's a sinus infection. I have hashimoto's hypothyroidism, but am taking synthroid for it so the fatigue shouldn't be from that. All of my bloodwork has come back fine except for elevated white blood cell count.

I would say that I am doing generally better now than I was a few months ago, but I am miserable. I have small good days where I have enough energy to go out for a bit, but am exhausted, and usually take a few days to recover. I still have fatigue, malaise, and a stuffy nose that has never gone away. I have had serious depression from the lack of energy and getting out aswell. I'd love to feel normal again, but feel so helpless. I've been good about my diet, currently vegan and taking vitamins/supplements and doing nasal rinses (incase it is something sinus related).

Could this just be a resistent sinus infection or does this sound spot on to CFS? (I have gotten sinus infections before, but never for this long) I'm new to learning about CFS so I don't know the standout symptoms. To put myself in context, I'm 23 and was very active before this illness. I hiked, rock climbed, and loved being active! Any help or tips on what kind of doctor to see would be so helpful. I'm going to be tested for rheumatoid arthritis next week, trying to cover all of my bases.

Thank you again!

Lydia

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14 Replies

  • Posted

    Hi Lydia,

    A friend of mine has cfs/me after a virus and also gets the sinus issues and burning up with her symptoms. Ask your current general doctor if they think you could have cfs/me and if so, can they let you know whether there is a specialist service in the area. I know how tough it can feel with so little energy with low mood being an added symptom. Try to keep in mind that it will pass.

    Not having the best of days myself today so, will finish with hope this helps

    B

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    • Posted

      Thank you so much for the reply! I will ask about CFS with my GP when I go in next week. I had asked about it with my ENT doctor, but he seemed to bizarrely brush it off as not a possibility. Obviously I'm not as convinced as him.

      I'm sorry you're having a rough day. Stay strong and positive!! And thank you again.

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    • Posted

      Hi Lydia,

      Thankyou. I kind of over did things over the festive period but am ok. Can be hard to balance things when there are gatherings around this time. Also I live in England where it just flooded but was one of the lucky ones. Still, it adds to the exhaustion etc.

      Hope that you get the answers you need soon. Best wishes

      B

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    • Posted

      Thank you again, B! It's very kind of you to reply. Hopefully now after the holidays you'll get more time to rest! (: I didn't hear about the flooding! I hope it hasn't done too much damage.

      I have a lot to discuss with my GP this week haha.

      All the best wishes and good health to you!!

      Lydia

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    • Posted

      Hi Lydia,

      Thankyou. It's often the case for me that I still manage to overdo things and need to rest. I got help with the preparation bit. Just Its hard when you're the one who normally does everything. In regards the flooding, I was personally very lucky. A team of neighbours managed to avert the water's but, not so lucky nearby. River levels were highest recorded. A massive clean up operation in place now. I'd have helped before but am aware of my limitations!

      Hope you had a decent festive season. In regards seeing the gp, you probably know what you want to say but, with the Memory issues often accompanying cfs/me, I find It often helps to write things down.

      Best wishes

      B

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  • Posted

    You say you've had bloodwork done, so other illnesses have apparently been ruled out. The next step is to see a doctor knowledgeable in ME/CFS. I'd recommend an infectious disease specialist. You could also see a rheumatologist. Some typical symptoms of ME/CFS: of course, the unrelenting fatigue; post-exertional malaise (increased fatigue after any activity); sleep issues; cognitive problems, like short-term memory loss and difficulty concentrating. Other common problems: digestion problems, headaches, joint and muscle pain, dizziness and nausea, heart palpitations, the llist goes on. In this day of the Internet, you have excellent resources for learning about ME/CFS. Simple Google ME/CFS symptoms and see if the symptoms resonate with what you're experiencing. Also, go to the "Solve ME/CFS Initiative" website. They have lots of good information. If you happen to live in the U.S., I might be able to recommend specific doctors. The symptoms you mention in your post do sound like ME/CFS. In case you do have this illness, you should take it very easy and don't try to push through the fatigue. You risk making yourself a lot worse. There's no known treatment or cure for ME/CFS. People can just get better over time. Also, since you're young, I think you have a better chance of getting better. Just take it easy and get lots of rest.
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    • Posted

      Thank you! Your reply is really helpful. I am in the USA in the Washington D.C. area, if you have any doctor recommendations on the east coast I would really appreciate it!

      I had been wondering about the fatigue, if I should push through it or just rest, so I will take your advice. I will definitely do some more intense research on the topic. Thank you for the website recommendation! And thank you for the reply!

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    • Posted

      You have one of the foremost experts in ME/CFS in you general area: Dr. Paul Cheney. He, along with Dr. Petersen, was one of the first doctors on the scene during the outbreak of ME/CFS in Incline Village, Nevada. I think that was in the early eighties. He practices in Asheville, North Carolina. The phone number of The Cheney Clinic:  828-274-6665,
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  • Posted

    Sorry to hear what you are going through, I am 19 and can relate to the sudden changes you are experiencing as I also went from being very active to basically exhausted 24/7.

    As you have said would exhaust all other routes before considering CF, ie you have stated you are vegetarian - are you ensuring you are getting enough b12? And it might sound silly but also protein? Might be worth getting checked along with other things such as Lyme disease.

    I personally after 8 months have concluded my chronic fatigue is due to Sibo so at least I have pin pointed my cause. Although that is just a fraction of the battle.

    Do you have a white tounge or any specific symptoms after eating or is it simply consistant fatigue you suffer from?

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    • Posted

      I'm so sorry you're going through severe fatigue too. ): it's quite a big and unwanted lifestyle change.

      I did get testing done for lyme because I hiked a lot, but luckily that came back negative. As for my diet, I've been vegetarian for about 5 years, and now vegan for just over four months. I'm really good with my diet and take B12 supplements along with DHA, CoQ10, D3, and a bunch more. And yes! I do get enough protein for sure! I've don't a lot of research into nutrition, so I'm luckily not just eating a head of lettuce and calling it a day, haha. I've also cut down on my sugar intake as much as possible.

      It's been rough to pinpoint anything specific for my illness because all of my symptoms seems to be overlapping for multiple illnesses. I have severe fatigue and malaise, constant stuffy nose, achy glands (mostly behind my ears, under my tongue, and sometimes my armpits), sleep has been rough and I never feel rested, I get brain fog on my bad days a lot with a hard time remembering things (sometimes I do have my ol' brain back and my memory and thinking is clear!), I've gotten decently severe depression for a while, and also have been noticing my body is just generally inflammed.

      I recently got carpal tunnel syndrome in my right hand, which has been getting better with a brace and ice. I felt it was related to my current state of being sick, because the timing of it. I've played piano and guitar for over six years while I would also be rock climbing and spending my free time drawing, so my hands have been used to being used a lot with no problems and suddenly now: carpal tunnel. It just seemed odd.

      I'm so sorry for your diagnosis! But it is good to have it pinpointed and be able to focus on your treatment regimen. I hope you are feeling better! And thank you for your response!

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    • Posted

      Glad to hear about the Lyme results and your suppliment regim deffinetly covers all your bases, it's good to hear your well informed about nutrition.

      Sorry to hear about your carpel tunnel struggles it does seem coincidental but maybe that's simply the case, I hope you continue to improve.

      oh god I can relate to the brain fog - by far the worst symptom! however like you it comes and goes for Which I am grateful.

      what has really helped me is eliminating certain food groups such as gluten and nightshades, (expecially nightshades) along with others, in fact the only carbohydrates I am comfortable eating is rice and sweet potatoes.

      I would strongly consider doing an elimination diet of rice and vegetables just so you can see how much you can contribute food to your symptoms.

      Wish you the best.

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  • Posted

    sounds spot -on for cfs.Ask your sister if anyone who attended her wedding had severe tonsilitis around that time(cfs is often caused by the Epstein-Barr virus(glandular fever)-and they don't call it the kissing disease for nothing.It often affects young,very healthy people-and can take quite a while to clear the system.It causes fever,muscle pains,exhaustion and brain fog,as well as lymph node /gland swellings.If you still have your tonsils,you may be lucky and get away with septic tonsils.Antibiotics can help only with secondary infections.A good diet,plenty of rest and lots of sleep help,as well as drinking lots of water to flush out the toxins from the glands.Take vitamin supplements and don't worry if you can only just manage to feed ,dress and shop for yourself.If you overdo it physically,you will put your recovery back.Good luck and don't overload your body with many drugs,it has enough to do without dealing with side effects too.
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    • Posted

      Thank you for your reply! My symptoms actually started a few days befor the wedding, and sadly, no kissing for me haha.

      I was definitely not happy to take the antibiotics that I ended up going on, but felt pressured to try and treat whatever I had for work (obviously that didn't pan out how I thought it would!)

      My body has been feeling so exhausted, I usually cannot push past it if I wanted to, so luckily I have been definitely resting a lot. There just never seems to be consistent improvement, it's just kind of consistent which can be very frustrating. But it's been long enough that I have come to terms with it as much as I can.

      Thank you again for responding! I love looking into all possibilities, I will look into that virus.

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