I posted the following (below in italics) on the Peripheral Neuropathy (PN) board a week or so ago but am wondering if it may be more appropriate here. Thanks Fanfaire for your responses on the PN board!

Just to fill you in - I have not been diagnosed with a cause yet for the PN despite lots of tests. I have incredible muscle fatigue and stiffness and have aches and pains all over, as well as, from time to time excruciating joint pain which may be transient and last from -a couple of minutes to a couple of days. Once the pain disappears after one of these episodes, it's as though it was never there at all. There is no swelling or redness of the involved joint/s.

Most nights now I even dream I am so exhausted that I can't wake up and my limbs literally ache and feel so heavy while I'm sleeping and I make dreams around that also. Is this experience common to any of you or am I an idiot?

"It is now six months since I started to get daily around-the-clock symptoms of PN and it is nearly five months since I developed extreme whole-of-body fatigue.

The fatigue is quite debilitating and I am beginning to wonder whether I have ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), Fibromyalgia or CFIDS as some of you may know it as. So many of my symptoms are parallel, except for the Peripheral Neuropathy.

Does anyone know whether PN can ever be a component of ME/CFS/Fibromyalgia?

Also does anyone have any input on longterm sequelae to a persistent Mycoplasma infection?"

Our 17 year old daughter has CFS/ME and developed severe Peripheral Neuropathy and was wheelchair bound when her iron stores, Ferritin, became too low. A simple blood test of Iron Saturation and Ferritin will tell you if this is the case. She had a large IV infusion of iron and now takes iron (Nephron) daily and her PN is gone and has not returned for 5 months now. She still fights the CFS but due to meds that she is taking, she is now feeling so much better. We would be happy to share that information if you are interested. Good luck to you.

Megan,

I didn't see any reference to medications.

Are you taking any medications or suppliments and if so do you see any help or relief even if a little.

Ron

Thanks 'Helping',

I looked through the list of blood tests that I have had done these last few months and 'no', Ferritin and Iron Saturation have not been done. However my Hb was very good at 150g/L (range 130-185) and Mean Cell Haemoglobin was 31.9 pg (range 26-34). I don't know the extent that the Ferritin and Iron Saturation , if low, impinge on these results. Perhaps I can ask at my next visit but any more advice beforehand would be helpful!

I have had times, a few years ago, when my Ferritin was below the lowest figure in the range (and it is a huge range from memory) but nothing was done about it - so there must be other factors to consider.

Recently I had an allied health practitioner tell me that he thinks my whole-of-body cellular oxygenation is low due to a cascade of messages not being transmitted properly due to nutritional or even mitochondrial defects!!!! At the time he talked to me about this I was so fatigued and I couldn't take much in - very technical!

To Ron!

I have been reluctant to accept medication until most of my testing has been completed - so I am not on any conventional Peripheral Neuropathy medication at this stage nor have I even got a CFS/Fibro diagnosis.

I am however on Hydrocortisone for adrenal insufficiency - longterm.

Also a few weeks ago the allied health practitioner, whom I referred to above, after doing some of his type of tests (spatial, coordination and other weird things) put me on Shark Liver Oil. I was quite negative about taking this stuff but two days later in the afternoon about 3pm I started to feel a 'veil' or 'cloud', so to speak lift from my brain. Then the following day I felt amazing......and for five days I had the best five days in five months!!! Yipee I thought I was coming through the other side. On the sixth day I didn't feel so good and then had a bit of a downward spiral, fatigue wise. When next I spoke to that practitioner he felt that I was probably detoxifying and needed liver support. He then added some more things like N-Acetyl-L-Cysteine, Yellow Dock and Chlorella. I feel that the fatigue is somewhat improving again but not as good as "those five wonderful days yet".

During those five days, although the fatigue was 'gone' the PN and the aches, pains and stiffness were still there...but it is the general debilitating fatigue that has been overwhelmingly impacting so much on my well-being and ability to function. To be rid of that alone would be excellent!!!

Hi Megan, if you have severe fatique then it is unlikely that you have ME, as fatique is not a symptom, contrary to popular belief.
My adult daughter has severe ME has has spent a great deal of time and effort to research this illness, its diagnosis and treatments, as well as dispelling the myths.
I invite you to have a look at her much acclaimed website, where you can get the lowdown on ME.
Search for A Hummingbirds Guide. Hope it helps you.
Getting a correct diagnosis is vital, but you need to be well prepared to do battle with the medical profession.

peter thank you !

cfs and me are not the same... i have me

cheers

Sorry to hear that, but at least with a diagnosis you will be able to learn more about your illness and possible treatments.
My daughter has done a huge amount of research, and keeps up to date with all developments.
She has had some success with her enormous trials of medications and supplements over the years.
Ignore advice from well meaning friends/ family, and try only those treatments that have a solid basis in results.

Fibro = Fatigue is definitely me! Besides the ache and pain from the fibro, I find the fatigue the most debilitating. The chronic myofascia pain is very debilitating as well. You can touch me anywhere on my body and it hurts.

I hope you find your answers!

Hi Megan,

I totally don't know what I'm doing here as I have just joined and likely don't know how to post right since I have not even yet read the instructions. So, I did want to respond to your query. Of course I cannot diagnose you, only give some feedback from my perspective as a patient of both FM and ME/CFS. I do not, however, have any peripheral neuropathy!

It seems to me that most everybody with these two disorders complains of memory and cognition problems along with the fatigue and the pain. So, just on that basis alone, does not bring to mind these two disorders.

You also mentioned severe joint pain and it being transient. Altho joint pain is listed as a symptom of I believe both disorders, I have never heard of folks complaining of severe joint pain, and I had been on a chatline with around 1500 members for approximately 5 years, and so I've heard a lot of people's stories.

At any rate, sounds like your symptoms would be quite a challenge to any doctor . . . and this is very unfortunate. You get so so soooo many docs who simply want to dismiss everything and hope it goes away so as to get on to their next patient and get thru the day. Yes, it is very very unfortunate that it has to be that way. You just need to stay one step ahead of them and come armed to your appt. with as much information as possible, learn to talk to them on their level, don't say, "I read it on the Internet" unless you can cite the precise medical journal and have a copy of the blurb as well. So, you are headed in the right direction insofar as informing yourself.

One other suggestion: of course look on the 'net for any peripheral neuropathy groups and also, quite possibly this could be some sort of unusual autoimmune disorder. So, I would read up on those things and also make an appt. with a rheumatologist. After all, if your joints are affected, this is what their specialty is for . . . Good Luck.

Joey

Hi. Megan. I'm new to group but have had FM for a long time. All I can say is be persistant on your quest and keep a journal of some type of your daily symptoms, diagnosis, Dr's comments etc..Knowing where you have been, can make it easier to know where to go next! Especially when you have multiple Dr.s working on the problem. I empathize totally with the fatigue aspect. Just keep doing what you can each day.