Fibromyalgia Support Group

You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.

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irishrooster 07/25/2011

Hi all, Just wondering if anyone could tell me if you suffer from some of the same issues that I have. I was diagnosed with fibro 2 years ago but probably had it for about 6 years. The nerve issue really bothers me as it is so extremely painful. I have horrible shooting sharp pains in the upper part of feet, the toes, and the ball and arch areas of the bottom of my feet. I also have these same nerve issues in my hands, with my fingers having the sharp shooting pains, all the joints, my knuckles, the tops of my hands, the palms of my hands and even my wrists. Now the pain is beginning to bother me in my knees. I take Lyrica for it and it seems to help but not always. I actually seem to have more nerve pain than I do muscle pain. Some of the ares that hurt the worst actually have these little round raised areas of skin about the size of an eraser head. When I push on them the nerve pain is horrific!

Now I just developed vertigo about 3-4 months ago but it is getting so bad that it is lasting sometimes a whole day. Which means I have to drive with it and since I sometimes see double and cant judge distance with it, that is not a good thing (driving). I am wondering if anyone with fibro has vertigo? I also have these lump things under my skin. When I first started getting them about 3 years ago the doctor said they were fatty tissue and not to worry. Well there are tons of them all over my body now and the fatty tissue story just doesnt make sense any more. They are tender to the touch. some are small and some are getting so big they look like they want to break through the skin. Any ideas on those?

Finally has anyone ever heard if fibro can be brought on by any type of viruses? I had Epstein barr virus super bad and I had a long recovery from it. Also that led to Chronic Cytomegalovirus, which because its chronic will obviously never leave me. I also have been diagnosed with Chronic Fatigue Syndrome. They tested me and said that my serotonin levels were so low they would not even show up. Has that happened to anyone? Im a mess yes I know. But somehow I gotta keep it together because of my sons. Thanks for any replys!! Irish

Mid 07/25/2011

When it comes to pain, the way the pain feels and when it happens can be from a number of different origins.
I have myofascial pain as well as fibromyalgia and it means that sometimes, the pain is from one, sometimes, both, and what works for one can often make the other worse.
You probably need some more testing to find out exactly what triggers the bumps under the skin. A virus can cause a number of autoimmune reactions to happen. This change in reaction can bring out overwhelming pain reactions.
Best wishes in your feeling better!

deleted_user 07/25/2011

I get Nerve Pain, and Quite alot of it.

I get Some in my (left) Arm, Wrist...hand.

Mostly (For me) it is Thru my Chest (Mostly Left Side), and my Legs.

I have RSD in my Right Foot, but it is In Remission right now...hopefully it will just Stay There !!

I get Trigeminal & Occipital Neuralgia ATTACKS...this Pain Is INTOLERABLE..

I am on No Medications for Any of it, as I am Intolerant of The Meds..Quirky little Twist of Fate.

I Apply Cool Cloths to whatever area is Affected on any given day..this seems to Uninflame (Is that a Word ? No ?) the Nerves.

WhatEVER Ya Do...Do NOT Apply Heat to a Pissed Off Nerve !!

deleted_user 07/25/2011

Oh yea..I DO have Plenty of Lipomas..as Long as they are Not in an area that is going to cause Problems, best to just Leave those alone..to remove them would cause Scar Tissue, then you can end up with a Worse issue.

I have No dizziness..Cannot help with that one.

Hugs !

irishrooster 07/25/2011

Hi mideyebrow,

Thanks for your reply! I have been wondering about the myofascial pain for a long time now. Yes, I have so many different types of viruses that have caused me much suffering. I have been going through the CFS thing now for about 2 weeks and it is driving me crazy! I cant get anything done and it makes me feel like a failure to my family. I know we all have to overcome that hurdle several times. Are we ever successful? Thank you again, I am going to the dr. tomorrow and will mention that he should retest for the EBV and the Cytomegalovirus again. I am going to see if he can test for someof the other herpes viruses as well. Take care and have a good restful, (cant say pain free because thats kinda stupid sounding!!) but as pain free as possible week! Irish

irishrooster 07/25/2011

Hi Dakota, you really seem in the "know" about all your different nerve pain. How did you find out so much info? Did you go to a neurologist? I really want to be referred to one but I live near Austin and most of our neurologist will have nothing to do with fibro people. You would think such a peaceful and caring city would have dr's who are the same but forget that! They are, as a majority, very rude and hateful people who think all women are crazy and hysterical and thats why we have hypochondriac pain! I am thinking of telling my doc to refer me and mention I have borderline diabetes because then they could at least run a nerve test without being so prejudiced against me right from the start.

I will remember about the cool cloths I usually try to massage them and I do this in counter-clockwise circles...my internist told me to try this...and sometimes it works and sometimes it doesnt. I did buy that stuff that is over the counter called "Neuragen" and it is a liquid homeopathic solution that seems to work a little bit for a little while. Better than nothing I suppose.

So what is up with "lipomas"? Why would they continue to grow so much and why would they want to come up through my skin? Some of the ones wanting to come up make the skin above them look bluish. Its really weird. Its like an explosion of them came up all at one time. I hate them!!! Thanks for the info! Have as little pain as possible this week, I do feel for you!!

Fantod 07/26/2011

I think that you need to get copies of all of your medical records to save time and money and see another doctor. There is absolutely no reason for you to be suffering like this. It is obvious to me that your current doctor is not paying attention to what you are going through. As your employee, they should be vested in making you more comfortable and your treatment regimen should evolve to meet those needs. In short, you need to fire your current physician.

I suspect that the lumps that you are describing are trigger points. These are muscles that have contracted and will not release on their own. This is a "perk" associated with FMS. I've had them myself but not to the extent that you describe. My feeling is that your current medication is not sufficient which in turn is causing this problem.

Nerve pain can be treated with Gabapentin.

And yes, some people with FMS have had Epstein Barr.

Vertigo is another "perk" that can be associated with FMS. But, have you been tested to see if there is another reason for this problem other than FMS? Have you seen an ENT and/or a neurologist?

I have several suggestions to make your situation more bearable. You can go online to the National Fibromyalgia Association website and see a list of fibro-friendly health care providers for your state.

Or, you can call your local hospital and ask for the physician referral service. They should be able to match you up with a rheumotolgist and/or a pain management specialist (I have both) who have an interest in FMS.

And finally, purchase a book called "Fibromyalgia for Dummies." Like all of the dummies series, it contains good basic information. It is an easy read and will give you a very good oversight of this syndrome. Knowledge is power. We have to be our own best advocates when it comes to managing Fibromyalgia. Good luck and take care.

deleted_user 07/26/2011

I have the same pain issues that you do in feet and hands in fact that is what sent me to my doctor to begin with. He ordered blood test which showed an elevated ANA and CRP. That is how I ended up being treated by a Rheumatologist and was diagnosed with Lupus and Fibro. Out of the rest of the symptoms you have described the only other one that I have experienced is the vertigo. One the day I moved out of my multi-level house and into a ground floor apartment I experience extreme veritgo. I believe it was brought on by the stress of moving. That was less that 2 years ago and I haven't had again since.

irishrooster 07/28/2011

Thank you Fantod, Thanks for the info about finding a doctor who will deal comfortably with fibro. I know I need to do that because my current one is my internist and he really is good with the "internist" kinda stuff and always spends lots of time with me. My WBC counts have been up now for over 6 months and he just tested me again and said if they are still high this time he will definitely want me to see a Hematologist. I keep showing infection for some reason. I swear one day they are going to find out that this stupid fibro stuff is some big horrible virus and then all those men out there who snicker, not behind our backs, but right in front of our faces, will be a deeper shade of red!!! Sorry I am tired and mad and in pain right now...new pain...some kind of stabbing nerve pain right on the very inside of my left thigh very high up where it meets my "you know what". It is killing me and the Lyrica is not helping it! Well, one more thing to get used to. Hopefully I will get to know all of you more soon. My mom and I are having a garage sale in August and I hope to earn enough to buy myself an iPad. My two sons are always on our computer and by the time they are off I am too tired to login. Kids. Thank you for the info I will definitely use it! Irish

irishrooster 07/28/2011

Hi navymom! Yes, I have had my immune stuff repeatedly tested. I am one of those unlucky ones who seem to wait years and years to get a diagnosis so that we can finally learn the rules of our disorders and get meds and "try" to move on with our lives. I have been living in limbo since 2006 when the EBV hit me so hard. With in-laws who dont believe any of it and think I just use it all as an excuse not to clean or cook like a "proper woman" should and no family or friends around to help when the going gets tough, its...well....tough. I have had a RA of 20 for over a year and a half now but cant be diagnosed with RA cuz in Austin it has to be 30 or above. I had a positive ANA only once and they told me I had a "mixed Connective Tissue Disorder" and I should be tested every 4 months for Lupus, RA, MS, Scleroderma, Anklosing, and other immune problems. Already I have Sjogrens, Reynauds, IBS, tons of UTI's, Chronic Hordeleums (styes on the inside of your eyelids) and infections everytime I turn around. I am not a violent person but if that EBV was a person I think I would probably do it some serious bodily harm. Hopefully will get to know you know more since school is about to start...(Yeah!!---do love my kids very much though...) Irish

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