Curls or anyone

[uk2]

Hi

Went to my doctor again today to get my sick note and discuss what the neuro had said and the tests he had ordered. She has signed me off for another three months!!
I mentioned to her maybe this could be fibro but she sais that is general achy flu like sx and not nerve and muscle pain that i had been having not enough to keep me in imence pain for a week at a time!  Thats not really what iv read about the condition. Im so confussed and losts to as where to go from here she just wants me to carry on with my tablets maybe up them when i need to and carry on with the diazapam at night and quinnine tablets!!
Iv a three month wait for the MRI and not even heard fron the other hospital, i just dont know where to go to help myself.

Curls

If i was to get blood test done private how much do you think they would cost? And what would i be asking for?
Is there a blood test to difine FM /CFS iv had a ton of regular blood tests she could not tell me what the neuro blood test said as he had them and not her, should i ring them up and get the results or would they tell me them? The NHS is so different to the any other health system.

Hope Your Well

[uk2]

What a wonderfull idea that was didnt even know you could do that.
I got the email address and have sent a reply. If  you could confirm that it has arrived (as lately by brain and computers dont match!!) Have a wonderfull time. Today apart from bachache it is a good day!! Thank God

Take Care

Samantha

[Curls]

I sent a "private email" to you.  I have no idea how it works, so I wanted to let you know about it.  Please let me know if it got to you (even if you don't feel up to replying.)  Memory and word recall are two of the specific types of problems found in CFS/FM brain fog...  Hope you are having a "good" day,,,with more to come.

[uk2]

Hi Ida

I have been given lyrica and am on 375mg and am allowed to up this if i want but am reluctant to because of the stories iv heard though it has been a good drug for me, im also on diazapam at night and quinine i also take magnesium tablets and b12. But none of this helps in a flare it just helps me function around the house and with the kids.

I want to know what it is as i am a pro active person who would want to do everthing i could to help my condition myself as well as getting the right medical treatment, its frustrating i cant plan ahead or do things with my family cause i always have to plan round my illness.

Thank you so much for keeping me in your prayers Ida.

Curls

I do have memory problems, i forget where im going and saying i have word recall problems but not all the time. I have balance problems and bowel problems as well as the nerve pain/muclse pain and spasm flares.As the day goes on my muscle burn and my body tires to the fact i cant even breath, i find it hard to sleep through pain and always wake up tired, i have pain behind my head by my ears that is very painfully all the time, i have ringing in my ears and sinus problems. But the pain is the worst.

Hope Your Well God Bless

[Idab]

Hi Samantha, I have been searching this forum to see replies from Curls and I am so sorry that you are going through all this pain - there is such a fine line between CFS/FM & MS from your description of symptoms, one would just wish the Docs would stop looking for everything else that could be wrong and just concentrate on treating your current pain.  Surely from the above 3 illnesses matched together with what you have been through - they could start treatment for you or at least speed things up with MRI requests etc.  I do understand that the decision to prescribe nerve medicine can also be risky, but what can be worse than making your patient suffer.  That is why I am a big believer in 'treat the symptoms' - many specialists would disagree.  I had first hand experience with this type of treatment last year (when the specialists refused to give me any treatment, except saline drips), almost as if they were waiting to see what would happen next.  I am not surprised my WBC shot so high in Oct last year - my body was trying to help itself together with God's help, of course, and that is why I believe I now have some nerve damage, somewhere.

I will pray, as I am sure many others on this forum and the MS forum, that you get to that pain-free life.
Take care
IDA

[Curls]

I forget - do you have cognitive problems?  Without that I'd question a CFS diagnosis - but it can still be FM.  I find morning stiffness isn't a common symptom - it's more a particular pattern of flare for each person.  A flu before each flare makes it possible there's an active infection of any kind - so a test for any of the rule out viruses is worthwhile.

Hopefully has you switch gears, you'll figure out the stuff that works for you!  I agree, keeping a good repore with a doctor and using their skills that they do have is more important than trying to argue about something.  Feel good!

[uk2]

I was surprised by her reaction but i did not want to argue back and say iv been on the internet and i know more then you!! she has done so much for me chasing my very laid back neuro writing letters and filling in forms for me for free she has been a gem its rare to find that in a dc in the NHS believe you me!!

I dont think its MS in its early days back in Jan this year maybe as i only had mild problems then balance issuses and only right sided nerve pain in one area which i thought was from the car crash i had in nov 2006 but since then i have had only one week of pain free (still having slight neuro probs but not enough to stop me doing things)

Im not stiff in the mornings but i am after sitting for long periods i dont usually have nerve pain in the mornings when i wake (only in a flare) but as the day goes by as i do my house work running a house running kids to school and back the nerve pain builds up it is mainly on my hands arms and legs and feet, its a unbearable cant touch pain the cold sets it off the worst but also the heat is not great either that sets my pins and needles off in my feet.I did get the flu like feeling before all my large flares along with burning all over my body then spasms. My arms are getting better now and again i feel stronger though if i push myself i am in instant pain!!

I want to stop focusing on getting a answer and i want to get a plan to get my life back i am fed up being in so much pain most of the time i have so much i want to do with my life. (sorry venting)

Im glad the dc is looking out for other things i would not want to dx me wrongly.

I will look at these support groups. I do have friends have had ME but they just seemed to suffer from tirdness and dizzyness and memory problems but i also know someone in my church who has FM and she gets to the point like me that she cant even walk so i guess it effects people in different ways.

Thank you again so much for your support.

[Curls]

Hi Samantha,

Sounds like your GP doesn't know much about FM or CFS.  The type of nerve and muscle pain you describe is completely typical of them.  Your whole description is so classically CFS that I'd be surprised if you get another diagnosis in the end, including MS.  Even your description of being worse than MS was typical.  (MS hits slow and gets worse; CFS hits hard and then you find things to make it better.)  People think of these as a wastebasket diagnosis, but it actually has a very familar and specific presentation to it that's recognizable.  Besides which you've said here and I'm sure told her - that you get flu like/cold like reactions to exercise and exertion the next day.  Sometimes people find other conditions that cause their CFS to begin with, but either 1. usually they don't sound so classic in the first place or 2. they found the cause in their body (such as chari formation of the neck known to cause it in a small percent of patients) and the diagnosis of CFS was appropriate to begin with.

From what I read on the lycria question here, it sounds like just upping it isn't the best long term plan, so even that I'd hesitate on.

Can you google for FM and CFS in London support groups and try to find the people I'd been in contact with.  It was 20 or 30 support groups - way more than around here - listed on a main web page.  If you just found one of the groups and found people to talk to, I think that's you're best shot at figuring out how to work the NHS system.  

There isn't a diagnosis test for it yet.  There are some blood tests you should have to rule out other stuff like HIV, Hepatisis, syhillis (yep).  If you look at the sites I mentioned you should be able to compile a list.  It's important to rule stuff out since it's the only way to diagnosis it - and you don't want to miss something treatable.  If you get the neuro tests it can only help tell you more.  All of these, you may be able to talk your GP into doing "just to be sure".  You can do an NMH test at home.  I'll have to write on that later, or do some googling on it.  

Maybe print off some of the CDC information on CFS and send it to your doctor, with your symptoms underlined?  That will be more work to put together a case - but ask your GP to help you research this possiblity instead of dimiss it.  Also, you really fit the CFS diagnosis better than the FM one.  They are very similar but research is showing them to be different conditions.  However, how you fit into those two I could be wrong about because of your lack of fatigue and your pain levels being high.  Glad your doc is continuing to search, but she just doesn't seem to understand that CFS isn't about feeling like the flu in every patient with it.  The muscle and nerve pain is a common symptom.  I wouldn't have described it as flu-like in myself even eary on (I kept saying it was a cold that wouldn't go away that had unusual symptoms of all sorts of body pain and muscular fatigue and cognitive dsyfunctions.)

Well, I've started to ramble, but hope that helps.  I wish you were getting more of what you need, to be able to switch to focus on improving things.

If you want to put together a long list of what your symptoms are, later on I'll email you with the email for a local support group here.  You can send the list to them to as a "member to member" question.  And see if other people  identify with your symptoms and what they say?  Can't guarentee much useful response (everyone does have CFS), but alternatively, you might get some reassurance.  (Just remind me if I forget to do it later.)