So many symptoms and an 18 month wait :'(

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FluffyBunnyx
New Member


Date Joined Oct 2012
Total Posts : 5
   Posted 10/28/2012 8:21 AM (GMT -7)   
Hi everyone,

so my doctor thinks I have CFS/ ME, i suffer from so many symptoms and sometimes I worry that I might have a serious condition and its just been missed in the tests that they have done. My symptoms are:

>Fatigue, i cant get through the day without sleeping at least 2 hours or so.
>Body aches, they are very painful and are worse when I wake up in the moring, i also suffer from terrible back and neck pain.
>Headaches, these are only bad when I am under a lot of stress, they seem to be made worse by my neck pain too.
>a pretty much constant sore throat and sore glands in my neck
>earaches
>dizziness and I often feel very faint
>feeling sick and stomach pains, hardly any appetite
>poor body temperature control, either too hot or too cold.
>night sweats
>stiff joints, especially when I am cold.
> tender skin, it hurts to touch certain areas like the top of my hands or my quads.
>chest pain and breathlessness

There are probably more I just cant think of them right now, my doctor referred me to pediatrics but they rejected my referral and sent me to endocrinology. my doctor cancelled this because she contacted them and they said that they didn't deal with CFS. She then referred me to a fatigue specialist but they never came back to us so it was probably rejected too. Now my only option is to be put on the 18 month waiting list for a CFS clinic. I am really upset by this, I don't see how I am going to cope with an 18 month wait to finally be seen by someone. I am 17 and its ruined my life, I can't go out with my friends and have fun because I'm so poorly all the time :'( I am lucky that they are so supportive at school and allow me to have the time off I need and work at my own pace to get things done but it won't make up for the time I have lost. Please, does anyone have some advice on what I can do or how I can try and manage my symptoms a bit better. I am thinking of maybe asking the doctor about some different tests? Thanks xx

CryssyNichole
Regular Member


Date Joined Oct 2012
Total Posts : 25
   Posted 10/28/2012 9:04 AM (GMT -7)   
Your post tugged at my heart especially because of your age. I just wanted to let you know to hang in there and find peace in the little things. I would keep trying to find someone in your area and network to fit you in. I have a lot of your symptoms but have been diagnosed with fibromyalgia, chronic pain, and migraines.

Good luck! I have found a lot of good info on this site.

Cryssy
Mother of three beautiful children ages 12,6&5 and the wife of a great husband who really doesn't understand chronic pain.

Sufferer of Bipolar I, Chronic Pain, Migraines, Fibromyalgia, and extreme anxiety.

I am an ex-gymnast. I have several muscle spasms, several bulging discs, many bone spurs, I can barely stand normal touching by family, and I get about 5 migraines a week.

greatunclebill
Regular Member


Date Joined Oct 2012
Total Posts : 143
   Posted 10/28/2012 11:27 AM (GMT -7)   
i think you need to start over from scratch with a brand new primary care doctor. find a primary care doctor that is board certified in internal medicine.
gout, sleep apnea, asthma, copd, high BP & cholesterol, Gerd, light headedness, muscle weakness.

Lanie G
Forum Moderator


Date Joined Nov 2006
Total Posts : 6029
   Posted 10/28/2012 1:48 PM (GMT -7)   
Fluffybunny, I also think you need to change your primary doctor because you are not getting the proper medical care you deserve. You are technically a minor because of your age. I'm presuming you are on a parent's insurance policy?

What tests have you taken and what were the results? You (and your parents) have a right to have a copy of them, so please ask the office. The lab tests should be provided at no cost.
Lanie

diabetes moderator
diabetes type 2 controlled so far by diet and exercise
very low carb way of eating

FluffyBunnyx
New Member


Date Joined Oct 2012
Total Posts : 5
   Posted 10/28/2012 1:58 PM (GMT -7)   
Thanks for your replies everyone :-) xx

I am living in the UK and as I am still at school my healthcare is still free on the NHS. I am still able to change my doctor if I wish. I am going to see her on Tuesday as I have been very unwell with this cold for a while now and I can't seem to shift it, that's another problem I have, I catch anything going and I can never get rid of it.

I have only had blood tests done, but I have had a lot of them. The only thing they found was a small calcium and vitamin D deficiency which I have been taking tablets for. I have had them since the end of July. I would like to have some more blood work done I think and some tests done on my heart because a lot of my symptoms could be caused by a heart problem. Does anyone know of any other tests I could ask for? I think that as I have to wait 18 months they could do some more tests in the meantime xx

greatunclebill
Regular Member


Date Joined Oct 2012
Total Posts : 143
   Posted 10/28/2012 2:46 PM (GMT -7)   
you shouldn't have to ask for tests to be done..... a qualified doctor will know what tests to order. if your doctor doesn't know what tests to do you really do need a new doctor. look at it this way: do you trust your doctor with your life? if you don't, get a new one. if you do, don't second guess him/her. your life is in your doctors hands.

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 10/28/2012 5:32 PM (GMT -7)   
Fluffybunny, I am so sorry for the things you are going through and at such a young age. I wasn't diagnosed with CFS & Fibromyalgia until later in life. It certainly sounds like CFS to me & possibly Fibro. Has your Doctor done the tender points test on you for Fibro? Both of these illnesses are dx'd by excluding everything else because they both can mimic so many other diseases. That is why all of the blood tests. Ask your Doctor if she has checked for auto-immune illnesses, I think she probably did but just double check.

If you like your Doctor & don't want to change then have her refer you to a Rheumatologist. I was dx'd by two, one for the Fibro & one for the CFS, when you make the appointment make sure the Rheumy believes in CFS. Since you have insurance this is the time to get all of your tests done & get a diagnosis. If you don't think your doctor is doing a good enough job or if she doesn't listen, by all means get a new one. Now is the time to be proactive with your illness, don't wait until you have no insurance.

With CFS you have to pace yourself, you have a limited supply of energy & our bodies don't re-energize by resting. How do you sleep? You must get good sleep to combat the illness so talk to your doctor about medications or better yet supplements that aid in sleep. Use your energy wisely, go to classes & try to have some fun with your friends, if at all possible but don't expect to be able to do all you used to.

I would go ahead & get an appointment at the CFS Clinic. In the mean time do all you can, like asking questions on this forum, read all you can find on the subject & get a diagnosis. Many soft & gentle hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

FluffyBunnyx
New Member


Date Joined Oct 2012
Total Posts : 5
   Posted 10/31/2012 7:29 AM (GMT -7)   
Thanks everyone xx

No I have not had my tender points tested for Fibro, I think that my doctor was leaving that to the CFS specialist, she said that she has can't give me anything to help my symptoms until I have seen a CFS specialist it won't make much difference to me what she does at the moment.

I went to the doctors yesterday morning, she told me that she had received a letter from the fatigue specialist she has asked to see me and they said no they wouldn't and that I had to go back to the child mental health services, because apparently its all psychological. cry I am very upset by this, it is not psychological, yes sometimes I feel very down and depressed but that's because I am so ill all of the time. My doctor said there isn't anything she can do apart from make this referral to child mental health and try to get me an appointment as quickly as possible.

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 11/2/2012 7:56 PM (GMT -7)   
Fluffybunny, I don't know anything about the health care system in Canada so forgive me if I sound ridiculous. Can your parents take you to another doctor? Can they get you an appointment with a rheumatologist? Did the Fatigue specialist say why they wouldn't take you on as a patient? Just a few questions to better understand. Hope you are doing well. Hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

FluffyBunnyx
New Member


Date Joined Oct 2012
Total Posts : 5
   Posted 11/3/2012 3:07 AM (GMT -7)   
Hi jewelrylady x

I actually live in the Uk, but yes I can change my doctor. This will not make much difference though, all my notes will be transferred to the new doctor from the old one and things will just start from where they left off with the old doctor. This is what happened to someone I know when she changed doctors. I cannot get an appointment with a rheumatologist without a referral from my doctor, I can always ask her about this but I doubt she will agree. The fatigue specialist wont see me because they think its more of a psychological problem than a physical one, so they said I need to go back to the mental health services and be seen by a psychiatrist again. There is nothing my doctor can do, she has looked at all other options cry

FluffyBunnyx
New Member


Date Joined Oct 2012
Total Posts : 5
   Posted 11/3/2012 1:16 PM (GMT -7)   
Thanks Kate x

They think it is psychological because I was first referred to a mental health team because at first my doctor thought I was suffering from depression. The only reason I felt so low is because I was feeling so tired and poorly all the time. I will ask about a referral to a rheumatology team at my next appointment, but I doubt she will agree because everyone I have been referred to has said I need to go back to the mental health service. I never got a hospital appointment, the only care I get is from my primary care doctor because no one else will see me. :(

I have started fainting, I fainted on Thursday and thought nothing of it but I also fainted again today, I feel faint a lot but I don't usually faint. I am worried that I am going to faint at school and what will happen. As everyone at school knows I am unwell but not whats actually wrong with me I am not sure what would happen. On the other hand, this could be a good thing. If I were to faint and be taken to hospital I would get some more tests done and maybe they could find out whats wrong with me.

Mystery Illness
Veteran Member


Date Joined Dec 2011
Total Posts : 767
   Posted 1/27/2013 6:44 PM (GMT -7)   
FluffyBunny, Did you ever get any answers as to what is going on? You symptoms are consistent with Lyme Disease and possible co-infections. If you haven't figured out the cause of your symptoms, I would recommend visiting the Lyme Forum on Healing Well to get info. on proper diagnostic evaluation and testing for Lyme Disease. You would need to see a LLMD (Lyme Literate MD) to be properly evaluated and tested.

pocketfull
Regular Member


Date Joined Mar 2012
Total Posts : 350
   Posted 2/19/2013 10:18 AM (GMT -7)   
Dear Fluffy, I am so very sorry for your CFS. I turned 62 in Dec. Reading your post I remembered that in my 11 and 12th grade high school I slept all the time. I would fall asleep sitting in my desk chair. I stopped being head cheerleader. I had a very understanding boy friend all 4 years of HS. We would try to watch a movie or just go parking for some heavy petting. Guess what? Yep, I would fall asleep. On weekends I was useless to my mom, helping with house work. I just had to sleep. Back then they tested for tick fever, another test from just sleeping all the time to," sleeping sickness". That was it. I finally got over it in my 20s.

Can you go to an emergency room when you faint? You would at least see another doctor. His diagnoses might get you into a specialist, possibly a neuro. doctor. Any other doctor to at least get a second opinion. For now, dont fight it. Sleep all you can, all the time. Maybe your primary will push for another doctor then. I wish I could help you. I would do anything I could. I hope to keep hearing how you are....hugs...Cathy
I am 61 years young. I have neuropathy in both feet and hands. I have spinal stenosis and arthritis in my back. I am bipolar and with panic attacks. I cannot walk. I choose to stay home all the time. I love living in the country. Its very peaceful.
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