New to the forum?

Sign Up Here!

Already a member?
Please login below.

Forgot your password?
Need Help?  
Help finding some to help in or near Chicago, IL
3 Replies
SocialRats - July 2

I have not yet been bben officially diagnosed with FMS. However, at this point, I think it is the one thing that actually makes sense. Let me explain:

I was seeing a WONDERFUL pain specialist for a couple of years for my back pain and headaches. When he realized how bad my headaches really were (I was in such bad pain, I could not hide it that time)so he ordered an MRI which found a brain tumor and a sinus polyp. I had surgery to remove the tumor (even though the neurosurgeon did not believe it was causing my pain, which it was not) then saw an ENT about the removal of the sinus polyp (which went away on it's own without surgery).

I was managing my pain wonderfully, to be honest. While I was not completely pain free, I was functional. I was able to care for my now 3 year old daughter, clean the house, even ran a small animal rescue for a couple of years. He used a combination of chiropratic adjustments, trigger point injections, muscle relaxers and narcotics to manage the pain. I was not pain free, but was down to a 2 from a 9 (scale of 1-10), which I think was amazing. Thankfully, that doc was not stingy with the narcotics, allowing us to stock up a bit.

My husband lost his job, so we lost our premium insurance carrier, down to Medicaid (state medical). Because that doc did not take Medicaid, we had to switch to a new doc. It took us over a month to find one, that was just rude and treated both of us, (my husband who has a slipped disk in his neck) and myself, like we were drug seekers. She treated us like we were wasting her time and all we wanted were narcotics like we were addicts or selling them. Not worth her time basically.

We then were able to find a second doc who took state insurance (found out in my search that 90% or more of the pain specialists around here do not take Medicaid). He, however, does not like to give out narcotics PLUS he wants to deal with one pain before treating any other pains.

Well, this is what started me on my search. He wants ME to determine the cause of my headaches. He wants ME to go to different doctors to figure it out, however, offered no referrals that I could use. He just told me to find a headache clinic that took the state medical. OH JOY!!! So I started a search on the internet to see if I could determine the cause myself. In my long and tedious search, I came across the symptoms of FMS and when "OMG, I have most of those, including the tender points" (meaning that I feel like jumping out of my skin every time a doc touches most of those points, trigger points were very painful to me). I mean, who tells a pain specialist about alternating bowel issues when you have been on a variety of meds and the issues still exist? What female tells a pain specialist about abdominal pains when it could be linked to female issues? I thought the fogginess was linked to the meds, but now that I am not able to take them very often, it is still there. I honestly thought the cramps and spasms in my legs were from my back issues (which according to medical records, do not actually seem that serious). I thought my hands constantly numbing and tingling (falling asleep, or thats how it feels) was from a combination of neck issues and tendonitis in both hands (or so I have been diagnosed).

I really would like to go back onto the previous course of treatment that I was on. At least I was functional. The new specialist has me on Neurontin, 600 mg 3 times a day and not only does my back hurt, my head hurts (so I am between a 5-7 rather than up to a 9), but I am sleeping 12-15 hours a day AND STILL EXHAUSTED!!! When I used to sit on my bed to watch tv and such (my bedroom is my family room) now I rarely leave it. I had to have a friend move in to help with caring for my daughter. I had tried expplaining to my husband how tired I was (although tired never quite described it) he kept telling me that there was NO WAY that I could sleep as much as I do and STILL be tired.

Granted, he has his own issues which cause him to blow up (verbally) once a week or so (has to do with not fully processing the suicide of his brother some years ago, which we are now working on) but my constant sleeping was one of his set offs. We have been together for almost 5 years now and I know he tries. Now that I have FINALLY come up with something that makes sense and then some (not just about the pain, but everything that is wrong with me) he is trying harder to understand what I am really going through.

Honestly, I think I am doing good. I am down from 2 10 mg Norco every 6 hours to 1 5/500 mg Vicodin (that is with the tylenol in the meds) once or twice a day. I don't think it is because of the Neurontin, but my own willpower. Thankfully, my husband still had a stash from when we were still seeing the other doc!!!

I tried to explain to this doc how much I was still hurting last appointment. So what did he do? Up my dose on the Neurontin from 300mg to 600 mg 3 times a day. I also explained how my tylenol I was taking. His solution? Stop taking it. Now, I am almost non functional, wide spread pain (my head, neck, back, arms, legs, pain in my joints like shoulders, wrists and ankles) and depressed.

So, if ANYONE can help me with finding a doc that can help that will take Medicaid (not Medicare) in or around the Chicago area, I would SERIOUSLY appreciate it. My husband has been working for a friend the past few days, which hopefully will turn into a long term thing, so we are willing to hit ANY of the suburbs as well for this. Just someone who is willing to help return me to a course of treatment that was working for me.

At this point, I am not sure what depresses me more: Trying to deal with our current pain specialist, who is just not willing to listen or all the calls (again) trying to find a doc that accepts Medicaid. I mean, honestly, after the first 50 rejections, it does kind of get to you and you DO start to take it personally.

Please, please help. Once hubby has next day off, will be starting to work on the process to get an official diagnosis. I am just thankful that I FINALLY know what is wrong with me and know that I am actually NOT crazy, although it sure feels that way sometimes.


SocialRats - July 2

MY apologies for the novelette.


January - July 2

Very sorry to hear of the run around you are getting. Most of us know what it is like. Please be careful to do your own research before you start on any of the commonly prescribed antidepressants for fibromyalgia, as they can cause serious problems in SOME people. Just be aware of the side effects to watch for, and make sure you take the lowest dose you need. Do not allow a doctor to increase your dose "automatically," if you are doing on well on a low dose. Please also watch "Making a Killing" about psychotropic drugs on You Tube, so you will be informed of the "other side" of these commonly prescribed meds. If you are diagnosed with fibro you will probably be offered them.

If you read this website you will see that there are many possible treatments, and some think that fibro consists of several subtypes, which explains why certain drugs work for some, but not for others. If you google "Colorado Fibromyagia Center" they have a good explanation on their subtype list. It's possible fibro can be caused by one of these or some combination of: trauma, abuse, infections, psychological problems, endocrine imbalance, food allergies, malnutrition, etc. You mention back problems, as well as tender points. You may have other issues going on, as well as fibro. A gluten free, or allergen free diet helps some of us.

You and your husband deserve to be treated like human beings, with compassion. I know you feel horrible, but if you can manage it, it is worth writing a letter to complain about the rotten medical treatment you have received.

Please read the general discussion threads on here (the yellow boxes on the right take you to different forums), as well as the information in the blue boxes at the left side. This is a good community of people, with many different symptoms and experiences, and you may get some ideas that help.

Please hang in there - both you and your husband need to find the proper medical care. Don't give up, ask around, and search the web for other sites besides this one. Wishing you the best.

Google: "American Chronic Pain Association"

We can't post URLs for websites, but this list is from a website called co-cure (put the w's in front and org at the end):

These are fibromoyalgia doctors for the Chicago area. To post this, I have to remove their website addresses, but if you go to co-cure, you can get the information.

Chicago, IL

Dr. Alan F. Bain, D.O., Director
Internal Medicine, Bio-Energetic Therapy
The Center for Integrated Health Care
111 North Wabash Avenue, Suite 1005
Chicago IL 60602
Tel: (312) 236-7010 Fax: (312) 236-7190
Web site:
Chiropractical Solutions
Dr. Jeremy Weisz
1148 W. Diversey
Chicago, IL 60614
Tel: 773-598-5851
(FMS. "We take a natural approach to patient care."
"Dr. Weisz is the most caring doctor I ever had.")

David Edelberg, MD
WholeHealth Chicago
2522 N. Lincoln Avenue
Chicago, IL 60614
Tel: (773) 296-6700
Web site:
("He's a kind, attentive and well-informed physician. Even after several years of treating my symptoms, he continues to actively listen to me describe them and discusses other treatments even if only a small improvement is possible.")

Dr. D. Michael Kaye
5701 North Ashland
Chicago, Illinois 60660
Tel: 773-334-0575
(If it weren't for [this] supportive, symathetic neurologist I'd be a 25 year old with a masters degree on disability and unable to move without pain. As it is, my pain is controlled enough that I work full-time and live at least a semi-normal life.)

The Rehabilitation Institute of Chicago
Chronic Pain Clinic
Dr. Joanne Smith, M.D.
Dr. Norman Harden, M.D.
Dr. Michelle Mullner, M.D.
Dr. Patricia Cole, Ph.D.
345 E. Superior Street
Chicago, IL 60611
Tel: (312) 908-6900
(FMS) ("The Rehabilitation Institute is an amazing resource because it offers a wide variety of resources, including psychological service (helps with anxiety and depression), occupational therapy (shows you how to do daily living activity less painfully), physical therapy, biofeedback (relaxation/natural pain decrease techniques), and solid medical care. They also will work with your particular health insurance plan to maximize benefits -- or even help you if you don't have coverage at all. They helped me get my life back!"

"Anyone seeking diagnosis or treatment of Fibromyalgia in the Chicago, Illinois area should check into the Chronic Pain Clinic of the Rehabilitation Institute of Chicago. There are numerous physiatrists (physical medicine and rehabilitation doctors) who specialize in treating Fibromyalgia. ")

The co-cure website has other doctors in other areas of IL, as well as other states and around the world.


Fantod - July 2

Here is a list of fibro-friendly doctors from the National Fibromyalgia Association website:

Chicago - there are other listing for the suburbs
which I did not include. You can go to the website and take a look for yourself.

Patricia Cole, PhD

345 E. Superior Street

Chicago IL 60611


Pablo Denes

Cardiologist (This makes no sense to me)

675 North St. Clair Street

Chicago, IL 60611


David Edelberg, MD

Whole Health Chicago

2522 N. Lincoln Ave.

Chicago IL 60614


Norman Harden, MD

345 E. Superior Street

Chicago IL 60611


Robert Katz, MD

1725 W. Harrison St. St. 1039

Chicago IL 60612


D. Michail Kaye, MD

5701 N. Ashland Ave Ste. 204

Chicago IL 60660


Jack Rozenthal


675 North St. Clair Street #20-100

Chicago, IL 60611


Steven Stanos, MD

1030 N. Clark St.

Rehabilitation Institute of Chicago

Center for Pain Studies

Chicago IL 60610


Also, call your local hospital and see if they offer any free clinics or have a rheumotologist that does some pro-bono work. Ask to speak to a hospital advocate and/or the physician referral service and explain your situation.

If you do, in fact, have Fibromyalgia (FMS), there is a very good reason for your exhaustion. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. You need to be on a sleep medication like Amitriptyline. In the interim you could try Calms Forte, Mid-Nite or Melatonin which are all natural and available at the Vitamin Shoppe, in health food stores and in some instances the drug store.

Another, possibility may be depression. Constant sleeping is a hallmark of serious depression. Your need to sleep could be a combination of a couple of things.

See if you can get your hands on a copy of "Fibromyalgia for Dummies" which is a pretty good overview of this syndrome and how to manage it.

Good luck with your search and take care.



You must log in to reply.

Are you New to the forum? Sign Up Here! Already a member? Please login below.

Forgot your password?
Need Help?