Have I really got CFS/ME?
Posted , 5 users are following.
Hi there,
I was wondering if anyone can help me...
I was diagnosed with CFS/ME last week but I am driving myself crazy debating whether I have been given the correct diagnosis or not as I don't feel as though my symptoms are bad enough.
I currently work full time but I always feel tired. If I lie in, I wake up feeling refreshed but as I have to set an alarm for work, I usually wake feeling as if I need more sleep (even though I get 7-9 hours each night). I sometimes have trouble getting to sleep too as I feel too wired but this is only once a month ish.
At the end of each day, I am exhausted and I struggle to motivate myself to do anything. I no longer can be bothered to go to zumba which I loved before, I struggle to keep on top of housework and I have no energy to cook a proper meal, relying on oven meals. I often feel so tired, I want to cry. When I am like that, I feel not quite with it. Like people talking to me is too noisy or annoying and I do stupid things like forget why I have entered a room or I forget what I am doing.
I occasionally get pins and needles in my hands and feet but not every week. I also get sharp pains in the joints in my hands but only when I am feeling very tired or unwell (I would say once a month ish).
I have very poor core strength so my lower back aches after 10 minutes of standing and I always have upper back pain between my shoulder blades which is worse when I first wake (even though I have a new bed and mattress).
Until recently, I was cold all the time. However, this seems to have improved since having b12 injections.
I also often have stomach cramps and constipation. I also have the runs when I am anxious e.g. before exams.
Although I usually feel a bit tired and sometimes I feel so tired, I want to cry, I don't always have trouble and I have no trouble walking. I feel like stress makes me more tired as opposed to physical activity.
Do I have the correct diagnosis or am I just tired because I have a stressful job?
Thanks in advance!
Amy
1 like, 10 replies
jackie00198 amy57336
Posted
Have you had bloodwork done to rule out other illnesses? Go to the "solve me/cfs initiative" website, and see if the symptoms resonate with you. There is a wide range of symptoms, fatigue, and general disability associated with ME/CFS. When I first got it, fatigue and difficulty sleeping were my only symptoms. Then I developed anxiety and stomach problems. More recently, with a relapse, I now have pins and needles and other nerve symptoms. You certainly could have ME/CFS, from what you describe. I don't think stress usually causes fatigue. But stress does exacerbate the symptoms of ME/CFS. If you've been diagnosed with this illness by a competent specialist, I'd err on the side of caution and assume you might indeed have ME/CFS. What this means is that you should take it easy and not try to push through the fatigue, as that can make the illness worse and lessen chances for a recovery. Pace yourself, get plenty of rest, and de-stress in whatever way you can, be it meditation, deep breathing, listening to music, etc. I wish someone had told me all this when I first became ill.
amy57336 jackie00198
Posted
Thank you for your reply ?. I have had blood tests done but everything came back normal except my b12 levels. I was put on b12 injections but I have seen no difference in my tiredness now my b12 levels are normal.
Are you tired every day or do you have some days where you feel okay? Like last Thursday, I was signed off sick for this week as I felt so tired, I kept crying and I had brain fog and back ache but then, once I was signed off, I felt like a weight was lifted and on Sunday, I felt well and guilty that I have been signed off. I even went to the races! However, yesterday my back hurt after standing for a long time at the races and today I feel really tired (it is lunch time and I am still in my pjs and can't stop yawning). Is this normal??
Thanks ?
jackie00198 amy57336
Posted
With ME/CFS, everyone is different and has their own cycles of fatigue and feeling better. It's a roller coaster. I have some level of fatigue all the time, and huge fatigue after any activity. Even a shower results in my having to lie down. But I have a severe case. It is severe because I ignored my fatigue when I first got ill and tried to push through it.It also sounds like you have back issues, apart from your possible ME/CFS. I, too, have separate back issues that predated my illness. All this just makes it more complicated to figure out what's going on. But no matter what you have, getting good rest and reducing stress can only help.
sandy53965 amy57336
Posted
Hi Amy,
I think you are absolutely right. CFS/ME is much more severe, and includes many other symptoms. If you do have it, it's an extremely mild case. Some doctors are too quick to dianose the illness because they really don't know anything about how serious the illness truly is, and CFS is such a trivializing name for it. But just to be on the safe side, you probably do need to try to get a little more rest or sleep, and should try to get in some relaxation etc. especially with a stressful job. Stress does add to our tiredness (CFS or not) so hopefully a little more rest & relaxation, along with a light exercise routine will help. Good luck to you. P.S. My husband has been horribly ill with severe CFS and Fibromyalgia for over 27 years, and was completely bedbound for nearly two full decades, but now he can finally get around the one story house without falling, and can do very minimal tasks like taking a shower, wheras before he couldn't do anything at all due to severe weakness and inability to stand or do anything!
amy57336 sandy53965
Posted
imsolost amy57336
Posted
You have a mild form of CFS, like me. Last year I was almost crippled because of my CFS, i went to the ER over 15 times, saw doctors and they couldn't do anything, having had over 100 panic attacks and receeding hair. I work now and my CFS is mild, it flares up when ever I bend over or work out, I still cannot figure it out. Sometimes if I eat out and get full it triggers it. I cannot throw up, walking 30 minutes on a tread mill causes me to shake and triggers my CFS but I can work 7, 8 and 9 hours at work and still feel the same triedness or LESS as I do after 30 minutes of walking. I cannot figure it out at all.
I recently saw a neuro specialist and they said I had anxiety.
imsolost amy57336
Posted
amy57336 imsolost
Posted
Thank you for your reply! It is nice to hear from someone else with mild CFS/ME as I was starting to feel like a phony as my symptoms are not as bad as other people's! Do you experience symptoms every day? Do you mind me asking, what do your bad days look like and what do your good days look like and how often do you have bad days? Is it normal to be fine one day and then exhausted the next?
imsolost amy57336
Posted
Well in answering do I have symptoms every day, they are nothing like they used to be. Yesterday I started to bend over a few times and it triggered the symptoms and I got tired after that but I was still able to be awake all day. I have eaten fast food and sometimes it triggers it, I have eaten soup and it will trigger it. In the past I had to rest when these attacks happened, I would become dizzy, irritated, tight neck, hard to breathe my nasal pathway would block (a friend once noticed and said are you okay? She is a in the medical field.) Now if I get these symptoms they are light and I can still function, and I try my best to ignore it, I really believe CFS is a mental thing. There are somedays I wake up and I am more tried than I was before I went to sleep but those days are very rare now. My bad days depend on how late I go to bed and how soon I get up, and how tried I was going to bed. If I go to bed at 2am and get up at 9am I am weaker, I will avoid exercise for a day or two till I get more sleep. I was recently on vacation and we lived on the 3rd floor for a week, I was able to climb 3 floors for a week and stay up late, 1-3am each night but by the end of the week I was tried. I was driving home and had my friend drive because I couldn’t handle it as I went to bed at 3am that night. When I am this tried my heart feels like it wants to explode, I am not sure if you all get this feeling but it is very unpleasant.
For me it seems like my back (bending over, sleeping bad) triggers my CFS symptoms, if I don’t get enough rest my mid back is in pain and stays this way for a few days till I get good sleep. If I wake up with pain in my back I know I am tried and going to have a bad day, it is always like this.
If you have more questions let me know
Beverley_01 amy57336
Posted
Hi Amy,
After reading the replies so far, thought I'd add that in England, the nhs see 3 levels of cfs/me: mild, moderate and severe. They aren't set in stone and people can move through them either way. My symptoms fluctuate, like many others on here. I'm moderate to severe at present. There are others on here, like you who manage to work but, are Struggling. you say you had to give up zumba, that's significant in that it's affecting your usual life. You say you're crying you're so shattered which shows that Even if you have this condition in it's mildest form, it's still very debilitating. Right now you need to be good to you. Rest is a major part of this. In the beginning, my symptoms could be very much like yours. I'd do things thinking I was "well" again only to get the pay back. A physio said something really important to me ( that I ignored at the time but, realized was vitally important later) they said don't use all your energy up doing things when you feel ok.
Do things in small bits at a time. So important to keep things gentle. I too have a back issue like you. Did you have this prior to the issues you now have?
Best wishes
Beverley