Where do I go from here?!

[TandA]

Please help as I am at the end of my tether.  I have seen two different doctors over the past fortnight, both of which have totally destroyed my confidence and belief in the NHS (I live in England).  I was finally diagnosed with fibromyalgia last year after suffering for nearly ten years.  I visited the GP recently as my symptoms were getting worse, particularly my chest pain.  Unfortunately my usual GP has now left the Practice so I had to see someone else, who proceeded to inform me that fibromyalgia wasn't a condition in it's own right but simply a symptom of depression!!  He insisted on giving my antidepressants (Mirtazepam) - which have left me feeling terrible ever since (even more tired, and I did not think that was possible!, aching all over, bad tempered).  I have now decided to stop taking them.  I then went up to our local hospital for an ECG to check my palpitations.  Unbelievably, the doctor there told me I just needed to go to the gym and get a husband!!  I am quite simply lost for words and feel totally abandoned.  What do I do now?  The medical professionals quite clearly think I am some sort of lonely, depressed spinster who needs to pull herself together (I am not, I am quite happy with my life - apart from all these symptoms)!  I know my own body and struggle on a daily basis.  I just need someone to take me seriously and listen to what I am saying.  I know that there is little that can be done to alleviate my symptoms but at the same time I refuse to be pumped full of drugs that I do not need simply because the doctor is too ignorant to acknowledge the condition.  I feel totally lost and need some kind words and advice!  Thanks.    

[TheLightSeeker]

Don't give up hope yet for a total cure!
Go and register with Yahoo "Beck-n-stuff" and "Rife" Groups.
It seems what antibiotics and your immune system can't kill, the machines and protocols of those 2, will. There're operating kind of "under the radar" for obvious reasons. Wonderful members advice and help.
I'm looking at getting into a complete setup , on a co-ownership basis,
the only way to get around the restrictions and red tape
and staying out of jail! LOL! (all for educational purposes... of course!)
First I need to do all my homework and research.
So many things, so little time! As they say!
I'm making myself a self- Hypnosis cd for resolutions implementation.
See that saying get challenged and changed to: "So many things, so much time!"
2012 is my BIG Year according to my Future Life Progression.
Big Hugs!!
Niko

[TheLightSeeker]

Don't give up hope yet for a total cure!
Go and register with Yahoo "Beck-n-stuff" and "Rife" Groups.
It seems what antibiotics and your immune system can't kill, the machines and protocols of those 2, will. There're operating kind of "under the radar" for obvious reasons. Wonderful members advice and help.
I'm looking at getting into a complete setup , on a co-ownership basis,
the only way to get around the restrictions and red tape
and staying out of jail! LOL! (all for educational purposes... of course!)
First I need to do all my homework and research.
So many things, so little time! As they say!
I'm making myself a self- Hypnosis cd for resolutions implementation.
See that saying get challenged and changed to: "So many things, so much time!"
2012 is my BIG Year according to my Future Life Progression.
Big Hugs!!
Niko

[Phtartist]

Hi Nik, yes we do think similarly.
I'm glad you posted the physical make up of mycoplasma, people have to know how hideous it is.
As for me, a regular test at Quest and Lab corp. confirmed mycoplasma.
The only thing, I do nt know specifically which one. Wish I did just for my own knowledge.
It seems the mycoplasma has infiltrated my body to the extent where, even Garth Nicholson told me I may be stuck with it for life!
I feel cursed, the Lymes can be treated .....I am improving but I will always be sick.
One note on long term abx treatment. It is the one thing that has given me my stamina and cognitive function back but on tests the viruses in my system have now reactivated. EBV and HPV are active again.
Sometimes I feel like a cash cow for doctors.
Now I go to a Rheumy because for too long my body hurts 24/7 on lower ABX, so it is not herxing.
I mean this from the heart, I hope you all find peace and answers and the New Year is truly the beginning of healing fr you all.

P.S. I went directly to MDL labs and drew blood there. Impressive location.
A doctor of mine has tested the same tests from the same person simultaneously at IGENIX and MDL and said the results were very close. Hmmm. Very close is not exact.
My other Lymes doc won't touch MDL.

[MrsAristotle]

Hi did your GP wear wolf skin, and carry a spear lol..........

Well ok, your in the uk, IF you can afford it well it cost 128.00 please visit the Breakspear Medical Group in Hemel Hempstead.

http://www.breakspearmedical.com/files/contactus.html

They are SPECIALISTS in Fibromyalgia. I was told about this group and will be visiting myself in the New Year, but my friend who has been ill with Fibro went to see them last year, and is actually stablilised now. They also found she was allergic to several things she used on a daily basis which was exacerbating her condition and making it worse.

She gets the chest pain it has a name actually. Costochondritis is common with people who have fibromyalgia. NOW the pain is similar to heart so musnt just be dismissed as Costochondritis and should be investigated.

Breakspear have changed her life.

Another place too is there is a clinic in Bath I believe or Bristol which is also a specialist in Fibromyalgia.

I so get fed up of our NHS system, some doctors are brilliant and others are just mind bloggling stupid and will not read up on these illnesses.

I asked my neuro when my illness started could i have had M.E. and he said there was no such illness it was all in the head I mean can you believe that I was totally shocked, and the next time I saw him I gave him reams of paperwork all about M.E. lol. IDIOT. M.E. is actually according to the The World Health Organisation a neurological disorder in its own right.

There are talks now actually that FMS/ME/MS are linked in some way.

I still think in 10 years time we will be told there is a new disease in town, which will sit in between the 3 and will have been caused by environmental issues, like breathing in green petrol every time we fill our cars up....now there is another story lol.

Dont be fobbed off with antidepressants they can cause as many problems as the illness itself.

Fibromyalgia likes exercise. Swimming is very good for FMS. IF it is FIBRO all you can do is manage the pain symptoms.

Fibro does not worsen not as such. Yes you can have good days and bad days....but the bad days should stay at the same plateau, and not go over that. IF they are then there is something else going on.......The pain can be higher then a 10 what I mean is the disability is not the same in FMS as MS for example which worsens over the time with FMS the disability should be the pain not being able to walk etc. (Sorry its a bit muddly there but i am tired lol been a long few days).

Another way to try to help is to check your diet.

I bought myself the MS Recovery Diet (because if I havent got MS then its a disease closely mimicing it), and i have gone Gluten free and dairy free, and feel TONS better more energy especially, my bloating has gone down, my stomach ache too, and some of my burning in my legs feels better too, and I have LOST WEIGHT lol.

Palpitations.....can be a sign of stress of anxiety (you are because you are not being taken seriously).

NOW please dont shoot me OK. You are 43 is there any possibility you are starting to hit menopause? (I did duck when I wrote that lol).

Check this out:

http://www.epigee.org/Menopause-and-fibromyalgia.html

There must be a reason why your symptoms have suddenly worsened.

Anyway if you can afford it I would definitely go see Breakspear.

Dont let the nHS get you down. There are new clinics opening up all the time now who will see you out of the NHS even homeapathic anything is worth a try.

Big hugs. Maria (5 years in limbo land).

[TheLightSeeker]

Hey TandA.
Unfortunately you must approach this situation very wisely and carefully.
There soon will be no LLMDs (Lyme literate medical doctors) in England & Wales. The GMC is in the process of withdrawing their licences. All other
medical doctors are exercising extreme caution when Borreliosis or any other pathogenic infections are suspect, while treating patients with
symptomologies consistent with such infections.
According to the expert in this field Dr. Garth Nicolson at immed.org,
two thirds of all FMS and CFS/ME patients have mycoplasmal infections
and many with evidence of additional coinfections such as Borrelia -causing Lyme Disease-,  HHV-6 and Cytomeglovirus (CMV) and other.

Phtartist,you continuously impress me with your posts. You've been through a lot and it is great that you're sharing your knowledge from your experiences. Keep it up. You're often in my field of awareness!
However, one small correction. Most regular labs cannot detect the presence of most mycoplasmas as they are the smallest living organism.
When they hide mainly in the tissues , they disguise themselves as regular cells, wrapped in cellular membrane, making it next to impossible for most blood tests to detect any mycoplasmas. The immune system in its  attempt to discover and tag them for destruction, has a hard time to succeed-the so called auto-immune response- attacking its own cells in the process rendering the destruction phase totally inefficient.
Meanwhile the pathogens continue to grow by feeding-off membrane sterols and thus weakening the cell membrane and compromising cell integrity and mitochondria function. It's a vicious cycle. So again reference labs like IGENEX Labs in California or perhaps MDL in NJ - I cannot vouch for MDL as I have no experience with them, just positive comments from people-
would you know, being from there?

Dusty, OMG, where have you been all this time. You are a treasure!
I've been on the A/I and FMS for a few months - never crossed paths
with you somehow.

Geminigirl1963, I wish we could invent a Fibro simulator  and put those Doctors in it for a few days- or a few weeks- LOL!

Happy and Safe Holidays to all!
Blessings
Niko

  

[dustybrown]

I would urge you to convince your GP to send you to a Rheumy as suggested earlier. The notion of being tested for Lymes is a good idea, but not practical. At least not presenting it to the GP.

In the US and Canada there is a political battle being waged about the treatment of Lymes. The basic treatment for it is long term antibiotics. One side of the war says first, there are HARDLY ANY CASES OF LYMES IN THE US AND the ones they do find do not have any medical proof of long term success of antibiotic use. There are issues that fall behind long term use of antibiotics such as potency for other disease in my opinion. I believe they are concerned with the medication becoming worthless for other diseases, so instead of blatantly saying that they are concerned about other people and disease, they just deny the efficiency of the medication to and cases to nullify the argument. This is an ethical fallacy of logic that the medical community does not want to address and it's disgusting in my opinion. Pretend the problem doesn't exist, so we don't have to feel bad about it- carry on!

The other side of the battle KNOWS there is a problem and wants to treat it. That's it- end of story. From what has been researched antibiotics is the only solution. If there is another solution, the folks who pretend there isn't a problem haven't made it easy to tackle the problem to search for new solutions.

Now, to your issue TandA- living where you do, you are in a tight spot. You have to work within the system you have been given. You have to find a way to convince your GP to allow you to see a Rheumy. The other option is to convince your doctor that he may be missing something- such as your mother has RA, or your sister has Lupus. If your current doctor doesn't know your family members- MAKE IT UP!!!! You need to find a way for them to find legitimacy to your story for you to be heard if they are not listening. I normally do not advise people to lie, but if you are not getting the care you need, sometimes it is important to find creative ways to be resourceful for self-preservation. Your health care system is hard to work with. You are not depressed hunny. You have fibromyalgia. It's different.

Also, you need to get your presentation together. It is everything. When you go to your doctor appointment, dress nice, do your makeup. Present yourself as if you were marketing a product-you! FM is an invisible disease. All he/she knows about how you feel is what you tell him. If you present yourself if a way that is sloppy, or if you come in and present yourself as a ball of nerves, your doctor will immediately shut down and label you as depressed. Doctors only have a few moments with you and have a tendency, just like police officers to type cast. It's not fair, but that's what they do. Remember, you are marketing yourself and what your needs are.

I know you can get what you want. You just have to come from a winner point of view. We all can do this. Eventually we won't have to manipulate and they will just listen. Good luck to you. Keep us posted.

Dusty

[Phtartist]

So ten years suffering, diagnosed one year ago, and in the past two weeks you met two doctors who have their diagnostic heads in the 1950's.
Unless doctors update their knowledge, you will be treated within their ancient information.
What about the doctor who diagnosed you with Fm? He/she surely has knowledge about the syndrome.
If an antidepressant is not agreeing with us, it is wise to tell the doctor and most likely change or discontinue use. Like Gemini said, what you are dealing with can trigger depression, so taking something that works, to get over the hump of this may help.
In the meantime, test for other possible causes of your pain and suffering.
When I hear FM has gotten worse, it tells me something else is contributing to what is going on.
For me t was Lymes disease and several coinfections after 12 years of FM diagnosis. It seems with FM we are not suppose to worsen. Our symptoms change, some worse but in general, the severity is the same.
Test for Lymes at a Lymes dr. Basic labs are inadequate at testing. Reading symptoms accurately is part of the diagnosis.
Yes, you have Lymes in the UK. Those buggers are everywhere.
(coinfections- Babesia, EBV, and Mycoplasma to name a few) mycoplasma can be tested at local labs, no special testing like Lymes.
Hang in there!

[geminigirl1963]

I'm sorry you're having such a difficult time with your symptoms, as well as finding a caring, responsible physician.  it's a shame that there are still doctors out there that simply do not believe that fibromyalgia is real - believe me, if they had to walk (or stand) in our shoes for only one day, their minds would change very quickly.  It's unfortunate that some doctors, unless they can actuall SEE something on an xray, scan or in bloodwork, do not feel/beleive that anything is going on.

If you've not already seen a rheumatologist, I definitely suggest you seek a consult with one.  They typically are the best type of doctor to diagnose and treat fibro - as well as there are more of them that do believe in it (or so it seems anyway).

While antidepressants are sometimes used to help in the treatment of fibro symptoms, they do not work for everyone and what one works for one person may or may not work for someone else with the same symptoms.  But just remember that just because they may prescribe antidepressants, it does not mean that you are only depressed - although depression quite frequently goes along with ANY chronic illness - it's all quite natural do get down and depressed sometimes when you're feeling sick most or all of the time.  However, what Im saying is don't let them "label" you as simply depressed - and even if the anti depressants do help alleviate some of your symptoms, again, it does not necessarily mean that your symptoms are all a part of depression.  Does that make sense?    LOL - I'm running on not much sleep here lately and my words seem to be getting jumbled very easily.

Unfortunately, it is usually a lot of trial and error when it comes to finding the right medication/s and therapies that help with fibro symptoms, so try not to get discouraged if you don't find the right "match" right away.  As you said, you know your body better than anyone and you can tell when something is not right with it.  Go with that gut instinct and keep pursuing GOOD medical care!

I wish you the best of luck and please keep me posted on how you're doing.