I think i could have CFS? Any advice would be greatly appreciated x

Brain and nerves
1

Hi,

My names Jessica, Im 24 years old and was generally fit and well. Im at university studying law and also have a 4 year old little boy, so as you can imagine life can be pretty busy.

Over the past 5 years various problems have arrose with no diagnosis after various negative tests. when i was around 20 i passed out quite frequently (at least once a fortnight) and was sent to see a nurologist where i had a tilt table test. this came back fine and was put down to possible slower blood circulation and nothing more was said or done. I continued to have these fainting spells even now although it has gotten a lot less frequent. In January 2014 i unfortunatley had a bleed on my brain after being in an accident, but all was well and it healed on its own. Since then I hae suffered extreme tiredness which i feel is gradually getting worse, but i have bared it. In December 2014 i was admitted to hospital with abdominal pains where i spent 3 days on morphine for pain control, i had ct scans, bloods, liver count, MRI  and an ultrasound done. All came back fine. I have since suffered aches and pains over my whole body on a daily basis, headaches and now have to wear glasses which are light sensitive (which i have never needed before). I also have stomach cramps and bloating and also acid reflux regularly, last weeek i had a colonoscopy and biopsies taken....again colonoscopy came back fine and just waiting on biopsy results. The next step is an endoscopy.

I feel like my life is on hold, and every aspect is suffering from my family to my education. yesterday i saw something about M.E/CFS so though i would check it out and the symptoms and suprisingly i felt everything seemed to fall into place. I cry every day to my partner about the pain im in and also the tiredness and how i feel my life has changed so drastically, Im so forgetful and have problems concentrating. No dr i have seen has ever mentioned ME but i really feel it may be a possibility. I do have a dr's appointment this afternoon to discuss this but i really do not know how to approach the issue after reading many drs do not like to diagnose people with this condition.

If anyone has any advice it would be greatly appreciated.

thanks in advance

jess x

2

Hi Jessica,

I have had CFS 15 months, before this very active, was a triathlete and marathon runner. My illness started with an infection of some sort, never identified. I've never recovered and if anything over the course have got worse with the fatigue. I think you have to have lots of illnesses ruled out before CFS diagnosis so make sure you have had lots of tests. Have you had anti-nuclear anti-body test ? Ask your GP about it. Make sure you also get tested properly for lyme disease as that can go undiagnosed for many years. I've had to quit my job and social life is now very poor because of my CFS, i am 35, was 33 when this happened to me and previously never sick much at all. Maybe you need to explore some alternative areas of health to help your situation ? I'm sorry to hear about your problems, there are many helpful people on here and i hope they can offer you more advice.

3

Thankyou for your reply David. I too was active and well which is why i find it very hard to come to terms with my current physical, emotional and social inabilities right now. Im really hoping for some sort of answer soon so i can move forward, On a bad day i can be in so much pain that my partner has to help dress me sad

I have not had or in fact heard of anti- nuclear anti-body test but I will deffinatley mention it to my gp and also with the lyme disease. Im so sorry to hear what a rough time youve been having with CFS and really hope you see some improvements in time

4

Thanks Jessica. Cos i have been at this 15 months, learning lots, maybe can give you a head start on a few things. You might want to look into using LDN (low dose naltrexone). Your GP is unlikely to prescribe it, i get mine on private prescription and it costs £18 months. LDN is used in CFS and almost all auto-immune disorders. Side effect free and extremely safe. It can also help with pain. It works with the body to produce more endorphins. MANY people with CFS/MS etc have amazing results using LDN. If you want to know more let me know. You can do it all over the telephone and email. I've only been using it one month but my sleep has got better. It's something that is supposed to work the longer you take it and when you find your correct dose. LDN Research Trust is a good website to visit. Not a day goes by where i don't imagine myself back at the gym and swimming. You can also get amitriptyline or duloxetine from your GP, they are anti-depressants but many people say they help really well with pain. I'm thankfully not in any pain, but i know it could still develop. If you want to know more send me a private message. All the very best ! Maybe also join some facebook groups on CFS, CFS support uk and also LDN research trust and got endorphins, i've found them very useful. There is also a trial finished in the U.S called Synergy (there are you tube videos) it's a trial for a treatment for CFS, using nutrients and low dose ritalin, results are extremely positive, final results are out in May.

5

Just to say from my previous email i do not prescribe LDN to you. LOL It sounded like that, but i can give you the contact details of private doctor who will do the prescription for you etc

6

Hi Jessica

Sorry to hear you might have ME...

It’s a terrible condition with no real cure or so I have been lead to believe fingers crossed you don’t have it as I wouldn’t wish it on anybody. All of your muscles can be affected in different ways including the heart and the brain, the secret is rest and more rest in the early stages then gradually expand what you can do. The condition has recently been reclassified as a disease in the world health organization’s classification of the condition so that may be of use to a Doctor who is trying to decide whether you have it?

With ME/CFS you have peaks and troughs in the recovery many people say they are crashing or have crashed out or relapsed. This can happen at any point and is very depressing when it happens, a positive outlook really helps you to combat this.

I speak for bitter experience of suffering for 20 years with ME and it has robbed me and my family of lots of things that I took for granted prior to getting ill with it. I personally don’t have a lot of faith in the Doctor’s and how they treat ME in the UK, but don’t get put off by their total lack of any positive diagnosis and help as they don’t fully understand the complex nature of the condition/disease to be fair. (Well most Doctors not all)

All the best for this afternoon.

 

7

thanks David i will deffinatley be looking into it although after seeing my GP, she totally dismissed what i mentioned and told me i was depressed. In her words "Despite not having suicidal thoughts you can feel physical pain". I am aware that you can feel tired and in pain whilst depressed as i have been on medication for the past few years. However i felt slightly insulted at the way i was almost told i was over reacting in not so many words sad

Back home i am again in floods of tears AGAIN! getting no where fast AGAIN.....and waiting on results again.

I tried to explain how i feel my life is on hold right now as i am totaly unable to complete "normal" activities...but of course her reply was "depression can make you feel that way" i know the difference between depression and this and i am sure it is not depression. I guess im back to square one

8

Hi Jessica,

Sorry to hear about how unwell you are.  I have had CFS/ME for 7 years now.  I was in my middle forties when diagnosed.  I was diagnosed by a specialist as a G.P. can not do this.  This was done after simple blood tests ruled out anything sinister.

You will find on this site that this illness effects many people in varying ways and degrees.  Bloating, stomach cramps, muscle twiches, muscle/joint pain, M.E. blindness are a few that I have experienced, as well as the headaches, and very low moods.

I have been given all sorts of medication e.g. anti-depressants, and am currently taking pregablin which really does take the edge off the pain for me, and just recently prescribed baclofen for muscle twiches.  Before diagnosed I was a normal mum, holding down a part-time job, then promoted to a Manager.  I had a really bad relapse in 2013 which saw my mobility fail dramatically and I became housebound for many months.  I currently walk with an aid and have limited capability.

What I would say, and I think others that use this site quite frequently well may agree, is that first of all acceptance is needed.  Once you accept that this is how your life is at present then you can start to rebuild, and lucky for you because you are early stages and diagnoses  and quite young.

Firstly, listen to your body and rest.  This is important for repair.  After a period of time of resting, it could be weeks, months, depending on how you are feeling and capability, then start to undertake little tasks or a short walk, with about 30 minutes break after.  If your body is telling you it is tired do not even try, or if it tells you it is tired and hurting after the task and break, do not do another one.  You should find over a period of time you are able to do more.  Unfortunately, for some of us who have had the illness for years etc. there is only so much we can do.  However, you must remain positive.  We have all been there, and some still there needing to have assistance with washing, dressing.  I have communicated with people on this site who are bedbound.

I recommend that if you google "Action for ME" you will find an awful lot of information for yourself and family which will be beneficial ranging from caring, work, benefits, etc. please take a look.

I wish you well and all the success to overcome this stage and into a recovery.  As and when you reach there, please take care not to overdo things (as I did), and end in major relapse and the next stage of the illness.

All the very best to you and your family.

Tx

9

thankyou for your reply dragontest,

As said in my above comment my GP told me I was depressed. I was half expecting this as I have seen so many other posts having the same result from doctors. I know my own body and how i am feeling and i know that theres something more going on. any ideas where i go from here?? i feel like im losing faith in doctors as i feel im kind of being made out to be a fraud and exaggerating. Its upsetting that so many people have to go through this before somebody listens. Obviously im not diognosing myself but you just know when theres something not right in yourself, the fact that im in pain every single day and unable to carry out the simplest of tasks, i know something needs to be looked at. I almost feel like im in an elderly persons body, always ill and in pain and ultimatley quite miserable sad

Im sorry that you have had ME for 20 years that must be pretty tough. 

Stay positive.

jess

10

hi tina,

thankyou for your reply. as posted earlier my gp basically told me it was depression and to go away and take paracetamol for a few weeks and come back. Totally dismissing anything i said regarding CFS. If im honest i feel like im not being taken seriously, I am a mom too to a little boy and had to leave him on his birthday to be taken to hospital for pain. What ever it is thats going on in my body is deffinatley not being exageratted, I would do anything right now to be back at uni and the gym and walking the dog. And then to be told  "your depressed" was a total insult to my intelligence.

I will check out ACTION FOR ME, and try and figure out my next step to self help some how. My problem is I have an do over do things all the time sad but i really will be listening to you guys after hearing how damaging it can be.

thankyou again

Jess x

11

I do so hop jessica that you get sorted.  It is demanding enough when it comes to a small child. If possible try to see a different G.P. You may be also seek advice from the website "action for M.E." It is very strange how different G.P.'s  see things and you need a good one on your side.  I think if it were me I would be insisting on a referral to a CFS/ME specialist.

Please keep us all posted and let us know how you get on.  I hope that we have helped you and let you know that your are definitely not alone and there is always someone on this forum who will support you as much as they can.  It is an excellent forum.

Take care and good luck.

Txx

12

sorry about all the typos and spelling, not too good today myself Tx

13

Hi Jessica,

Your doctor may ask you to attend a psychiatrist if they think you have depression I know mine did… the shrink told me “He was wasting his time and mine by continuing” which was true. I guess you have to jump through the Doctors hoops to get treatment for ME if they say your depressed its easier to say OK give it a go, take the pills and go back a couple of weeks later, in the 5 to 10 minutes you have with the Doctor they have to come up with something? Therefore, they try the easiest and cheapest things first to get you out of their door. If you go back, they try other routes if you do not go back they assume they have fixed you it is a simple numbers game.

It is all down to the WHO and their earlier classification of ME/CFS as to where the NHS puts people who have the condition/disease. They had it down a psychological illness not a physical one. So the majority of medical folk naturally think down this route when trying to “cure” a person, as I said in my earlier post to you, it’s been reclassified and we should see a change in the treatment of patients who present themselves to the medical profession with the condition/disease. However, that will of course take time to filter down to the GP’s we see.

When they have tried everything else and come up with nothing what they are left with is the condition that still needs treatment. GET (graded exercise therapy) does not work in the early stages of ME and will do more harm than good and Pacing is fine if you’re starting a recovery phase if not its of little use. Pushing yourself when your low is not of any benefit and will just compound the illness, learning to accept the condition and working with how your body feels to you is so important. Doo too much one day and expect 3-4 day of pain and set back.

Sadly people die from ME, the heart is a muscle that too can suffer from fatigue, so is the brain, ME is a serious condition that the medical profession are generally missing, and they are assuming people are lazy and depressed when it’s so far from the truth. Some people turn to herbal remedies, others try the latest medical pills to hit the market place, and some try expensive private care.

Nevertheless, please be careful on what you spend and take, as people with ME/CFS are desperate to get their old life back. I have personally avoided this route and despite having bad days and bad weeks. I just about cope on positive thinking and the failure to just give in.  I know of one person who spent over £15000+ on “a cure” and they are still no better than I am, who spent nothing in comparison. In fact they are still disabled by it, but much poorer.

If you’re working, please speak to the companies HR department as ME is covered by the Equality Act 2010 and Access to Work, can make changes in the work place so you can continue to work to some degree. If you are looking for work, please be honest with the employer as you may have a relapse while working for them and need their HR support by declaring it on the application form, you have a very strong case as they knew you had the condition (perhaps under control) prior to working for them. There is light at the end of the tunnel it’s just a long tunnel…

14

Hi Jessica

I just noticed you are at Uni you need to ensure they know you have ME and put in place support and a tailored learning plan for you. They can extend deadlines and the way they give you information you need to complete the course. Most Uni's do distance learning this might be of use to you also. The MMU in Manchester use pod casts and youtube clips for some of their teaching material this can be accessed off site by the students at their own time and pace perhaps there is similar in the University your attending.

Good luck.

15

Hi, Jessica. I'm so sorry for what you're going through. One thing I've learned is that I have to advocate for myself. So if a doctor tells you or implies that it's all in your head, inform him that no, it's not. You have something physically wrong. I had to do this with two doctors I saw before I was diagnosed. The medical community is woefully uninformed about ME/CFS, and often end up blaming the patients for "imagined" symptoms. It might be good for you to get on the CDC or other reputable ME/CFS website, print out symptoms, and assuming they largely align with your symptoms, bring this to your doctor. If all bloodwork and tests are negative, go to an ME/CFS specialist. Infectious disease doctors may be your best bet. I assume you live in the UK? If by any chance you live in the U.S., I might be able to give you the names of some experts in ME/CFS.  Good luck.

16

Thankyou so much Tina. All of these comments have been so helpful and really opened my eyes that it's not in my head and im not going mad. I have been going over the sympotoms for CFS over and over and have pretty much every single one and have done for a couple of years which is quite worrying, having said that its so nice to not feel alone.

i really do appreciate your comments

Jess x

17

Hi Jackie,

I have actually checked out all of the symptoms and have pretty much all of them, I saw a lady on another forum that did this and high lighted any symptoms she had and then took it to her dr. I easily forget things which makes telling my GP  my problems without writing things down difficult so this is something im going to be doing. I am from the UK and have had lots of tests already which are negative but i guess it will be a case of keep going back and telling them im not imagining whats happening to me sad its sad that this has to be done before anyone is taken serious x

18

Its funny you mention about having things in place for uni because a few months ago i noticed i wasnt able to sit through my 2-3hour lectures and hold concentration without feeling absolutly shattered, so i spoke with student services and i can work from home. This was before i had even thought about CFS, i just knew i could no longer do it. I will be returning to my drs in a week or so with my list of symptoms and ask maybe to see someone else, maybe a specialist or something.

Im so so pleased i signed up to this site, i really thought i was alone and possibly going mad at one point sad I think i have a cold and sore throat coming at the moment which is making everything a lttle harder and a little worse. i have just walked down stairs and back up and found myslelf out of breath.

I deffinatley will not be accepting that I am imagining all of this after speaking to you guys.

Thankyou so much for your response

Jess x

19

I have been sufferring with this for about 8 years. The problem is that the dr has to eliminate everything else before they can send you to a specialist in CFS who can confirm the condition and in my case that took a couple of years. Fortunately my GP has other patients with the condition so recognises the symptoms. I went to see a consultant in Poole who specialises in CFS to confirm my condition.

I have been lucky in that although it has severly impacted my work and I gave up for a time, I have never suffered any pain, but I have suffered with very poor mental function and I am a very bright person.

The bad news is that there is no easy cure. This past 12 months I feel that I have turned a corner with the condition, but I have done it all myself. I cycled 20 miles the other day and when I started several years ago a Suduko puzzle, if I could finish it took 30mins, today its around 8mins, sometimes 5 mins on a very good day.

I have made this success with sheer will power and pacing. I live on my own but I am not one to give up so I spent years in boom and bust mode which was very depressing. A year ago I started serious pacing, listening to my body and it has really paid off.

It might be worth you trying to talk to another dr in your practise and see if you can find one who believes in the condition. Many are coming around. All practises have a  PPG (Patient Participation Group) contact them and see if they have anyone who takes an interest in CFS. Another route is to talk to the Practice Manager and ask if any of the GP's have a special interest in CFS, it could even be on the Practice web site.

Don't give up but its a long road if you do have CFS

20

Hi Jessica,

How are you doing now?