someone please help- Fibro patient with additional problems

[dlhigh]

I was finally diagnosed with Fibro in Oct. I have IBS with it and I also have 8 herniated discs.  I've been told that exercise helps with the Fibro.  I have days where I wake up and feel almost normal and the longer I am up and walk around the worse I feel.......to days where I wake up feeling awful and stay in bed.  I understand that exercise can keep the muscles from wasting if your continually do nothing, but I'm being told to get out of bed and exercise and it's not possible on the bad days.  What's worse is, the exercise doesn't help me at all and it makes my back hurt so bad that I end up spending the next day in bed in pain and fatigued from the pain.  This is a no win situation for me.  My back is unable to withstand any type of exercise or else it causes me severe pain and then the pain causes me to be fatigued, have tremors and then kicks in the IBS.
I've been told that I have degenerative disc disease w/ 8 herniated discs.
3 cervical, 3 thoracic, 2 lumbar.  My T7-8, T8-9 discs cause me severe abdominal and chest pain that never stops, but surgery is not an option at this time.  I have severe leg aches/cramps and joint pain in both of my knees.  I've had two ESI's which were no help.  I'm on Tramadol, Lyrica & Zanaflex to help with the pain, which are not helping.  I've never had a spinal tap to completely rule out any other underlying factor for all these problems.  So here are my questions:

How can this be handled when I have so many things going on at once?
What else can be done for the pain (meds or otherwise)?
Should I insist on having a spinal tap done?
Does the diagnosis sound accurate? (possibly the Fibro came because of the prolonged pain from going 2 years w/o having a diagnosis and treatment for the herniated discs)

Currently nothing else is being done for me other than the meds.
Someone please tell me if there's anything else I can do.

[Ricobord]

Anyone who hears Fibromyalgia or Chronic Fatigue Syndrome froma doctor needs to make sure they explore the possibilityof Lyme Disease before settling on a treatment.  There is no known cause of Fibro or CFS, but all of their symptoms are on the Lyme list.

This document has a thorough symptom list for Lyme.
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

[dlhigh]

I agree laughter is the best medicine and yes......I've went through at least two of almost every type of doc out there, so it won't hurt my feeling to give him the boot either. lol
One thing does bother me though...........I feel sad for him because he must mentally be hurting already to be so cruel to someone who is physically hurting which is what's usually the case with mean people, but I always wonder.......cuz I suppose there's other possible explanations.
I'm a firm believer in, " what goes around comes around"
so I'm sure we each get our turn when it comes to pain, I only hope that when he does........he considers his words carefully the next time and doesn't make the same mistake twice.  lol
dlhigh

[ladywolf63]

Hey charge him 200.00/hr like he's doing you..LOL..;)

Laughter is the best medicine.

Hope your feeling better today DLHIGH...just remember, these so called pain docs' work for US, fire at will...I've fired so many I can't count, due to just that kind of **** you spoke of. If they could walk in our shoes for one day they'd be writing thier own rx's for large doses of demerol and phenergan and pop'n themselves in the butt.

Take Care...Have a Good Thanksgiving...let's all tell our FMS bodies to pay attention, tomarrow's a good day for protien and relaxation and that's what we need.
Best Wishes,
LadyWolf

[Curls]

"and on 9/11/01 during the chaos, he called me for comfort"  Find a new shrink.  Not only is this inappropriate, it means he's not going to be helping you the way you deserve.  Even if you like him, that's a flag.  It takes a while to find a good therapist, so some shopping around is needed, but someone calling you for comfort?  Where were his friends to help him, and his resources to teach you how to build for yourself?  I've had a bad experience of my own, and speaking out of that...find someone new.  

[dlhigh]

Initially it was thought that this was MS due to the severity of the attacks, wide variety of symptoms and recovery time.  MRI's showed no lesions, so that idea was set aside and when nothing else turned up, the doc diagnosed me with FM.   I've read on here and have been told that you can also experience symptoms of MS for years before lesions ever show up and the only difinitive test for MS as well as a few other autoimmunes is an LP, which has never been done to rule out these autoimmunes.  
I think that's why this is so frustrating.  The only reason it matters which or what this is, is so I can take the right meds and the meds I'm taking that I listed above are the same ones used for many illnesses currently including disc problems, FM, CFS & MS.....but there are other meds also that I could be taking and different therapies depending on what truly is going on with me.
My entire story with symptoms is in my journal and called a painful journey dated Oct. 24th 2007 on pg. 2 of my journal entries.  
I know nearly everyone that has responded to me since I first posted have their own pain or problems and have given advice that helps them.
I am very thankful for their care and true concern.  
I have seen my shrink since this began, but as strange as it sounds
I feel more like his. lol
I've been seeing him since 2001 and have shared with him everything about my life and on 9/11/01 during the chaos, he called me for comfort. lol
So I guess I'm not really worried about all this, yes at times frustrated.
Mainly because the pain is so intense sometimes that I need to go to the ER but I just lay and cry because I don't want to move and they never do anything for me anyhow, been there too many times.  I mean they do, they knock me out with meds, but that's only temporary relief for a huge bill and sitting in the waiting room for usually 4 hours or more while in pain before being seen, so I just ride it out now until it passes.  
I wish I had more help from my family with this.  They are put out enough to drive me to my dr. appts, but I really need help talking to my drs, so the doc can have a clear image of what's going on with me and direct me on how to get true relief from the pain while trying to find out if there are any other tests, doctors to see, as well as a new pain management doctor set up for me,
that would be nice.
My pain management doc went out into main office while I was in a room and he was talking to his nurse about a patient.  He was saying, " you should of heard this guy, he kept complaining about the pain.......expecting me to help......." while laughing.  This rude man is a pain doc and he thinks it's funny that his patient is in pain.  I haven't been back since and I need help getting into a new one.  
So anyhow, I guess I just take it one day at a time as all of you do and in the mean time I hope for some kind of relief to come.
Thank you again to everyone for your suggestions.  I think scheduling with a couple new types of doctors will be my next step toward getting an answer or some type of actual pain relief.  Send me a msg on my profile if anything else comes to mind or if any of you would like to talk more in depth about this or your condition and what you are dealing with.
dhigh

[ladywolf63]

Hi,
I'm also a FMS person, IBS and CFS runs with our little "syndrome" as they like to call it.
Exercise is good for it, but like you I also have disk problems and have had surgery..read my profile...Stretching is a good one that my Rheumatologist told me to do. Since with FMS we lak ATP, see Krebs Cycle. This gives us energy to our power house in our cells, the mitochondria. Don't do the LP...there's no definitive test for FMS but there is for CFS. If you have CFS your Eppstien Barr will be up there.
There's lots of information on FMS/CFS on the web now, do a lot of research when your up to it. I do know that feeling.
Ah...the pains of feeling like you have the flu, then there's the pinched nerves from your discs, life can be a B****. Pain meds will help, but you willl get mentally and physically dependant on them, so be prepared for that little world. But, it can help. Watch the weather, when the barometer changes and storms come in you'll feel it. You can adjust your life around the weather, I've been doing it for years. I'll even bet you've got arthritis in those areas where you discs are buldging or have totally gone. That's another add on to life with FMS/CFS and nerve damage. Just becareful as to what you do. LISTEN TO YOUR BODY..just like one said in a comment above. Don't over do it. Rest when your tired, but lying in bed alot will make you more stiff.
Have you tried heat? How about any depression meds? Depression comes with FMS/CFS too...since it changes our lives. Cymbalta was a good one for me for a couple days til it hit my IBS.
Have you seen a Rheumatologist? Find a good one, look up on your state's medical board for one and have a referral done from your PCP. Remember too, alot of PCP's don't really believe in FMS, although due to the EB test, they do believe in CFS. Don't listen to them, for they will just break your heart...find a doc that you trust, and you can talk to about everything and knows that FMS does exsist. Also, you may want to talk to a professional about your feelings. It has helped me with my "shrink"..lol..like I like to call him. He understands and it's good to have that in a doc. My Rheumatologist retired this past March and I miss him very much...you may want to look in the Journal of Rheumatology under Fibromyitis, Failed Back Syndrome for information on FMS. He always kept me educated.
Good Luck
LadyWolf

[FemmeFugazi]

Oye, Curls !

Great to run into you again. I hope you've been doing well, and feeling better. Feel free to PM me anytime if you just wanna talk, etc. I have been feeling better... until last night, when I had one of the worst panic attacks I've had in a long time.

I swear, I nearly went to the ER.... even though I know form what both my MD and my therapist have told me and what I've researched, I really don't have heart disease. It's just that that's what my panics lead me to believe.

I'm now looking in to  a thing called Neurocirculatory Asthenia. It's largely psychological and often mimic, almost exactly, the symptoms of a heart attack.

dlhigh -

FM and CFS are kinda like brothers. CFS is like FM's bigger, uglier, more persistent, and harder to catch brother. That's a metaphor I use a lot. And a lot of people with FM have CFS, and vice versa.

I have FM, as a co-morbid of CFS.

Given the extension of your symptoms I'm guessing you've got CFS, possibly as a result of having FM for as long as you have. The stress, an anxiety of dealing with the FM symptoms can lead to CFS.

There is this one lady I know- the mother of a friend of mine- she was diagnosed with FM and she told her doctor "No... I refuse to have that !" - and she commented to me that she feels FM is a disease that doesn't really exist and if you're tough enough the symptoms will just go away.

Well... that attitude may work for her... but I've found that if you have FM, you really have it, and it is as real as anything you can see under a microscope. And those of us who do have it really do suffer.... and we're always looking for anything that will help us get through it when the symptoms get really bad.

Feel free to PM me, dlhigh, if you wanna talk, or ask advice... I'm no expert... but I've put my computer to good use and done as much research as is humanly possible via our sometimes magical internet. So... maybe I can help...

[Curls]

Hi FemmeFugazi!  Sounds like you are doing okay.  Nice to see you here : )!!!

[dlhigh]

Thanks, I will talk to my primary about it at my next visit and see what his take is, see if he thinks this may be CFS.   My neuro diagnosed me with FM due to my symptoms, but I have a family history of FM, my great grandmother sufferred severely from FM symptoms but was never diagnosed with it, according to my mom and aunt.  My aunt and my sister both have FM.  My sister has had it for 10 years and is in constant severe pain, but she also has degenerative disc disease with multiple herniated discs throughout her spine like me.  My aunt has had it for 20 years or more and has to use a scooter to get around, due to the pain in her knees she can no longer walk.  
My brother has degenerative disc disease and has multiple herniated discs in his spine and has even had surgery on the ones in his neck, he also suffers from severe knee joint pain, headaches, insomnia, body aches and other problems, but has never been diagnosed with FM.
It appears that both FM and degenerative disc disease run in our family, but my doc was unaware of this family history when he diagnosed me with FM.
I didn't know about the history of it until I was diagnosed with having FM and began talking about it.  It just amazes me how some days I feel almost normal and can walk fine, but other days I can't hardly walk at all.  
I agree with everyone here, I think it's time I took a different approach and seen an Endo or Rheuma to make sure everything that can be done for me, is.
Right now I'm not doing any kind of therapy, no other tests, nothing but meds that aren't helping and it's becoming more and more difficult to climb stairs at all, as well as the fact that I believe one of the thoracic discs is bulging so severely that it's causing numbness and problems with my bowels, bladder and female parts.  I was told by a neurosurgeon that he wouldn't do surgery on my thoracic discs unless paralysis or complete loss of bowel or bladder control occurs.  It's getting closer toward this surgery becoming a necessary step.
Thanks to all for your help and please write me if something else comes to mine.  I'm a member on here so I'll be sure to post in my journal if there's any changes.

[FemmeFugazi]

I agree with Curls- sounds like you've got CFS to me. I think both Curls and I have it, as we've communicated about it before on another forum.

You've gotten a lot of good advice here from Curls and Crochetya; their advice is great and I'd go with it. It'll do you worlds of good.

I can add in a few little bits about my experiences with homeopathy, and some non-pharmaceutical meds that might help you.

My CFS effects my chest muscles more than my back because I have chronic chostocondritis (spelling ?) AKA Tietze's syndrome, and IBS can actually cause this. If you have IBS you can have cramps and spasms all over your upper body as the colon itself goes through it's spasmodic cycle.

Usually these will happen immediately before, or after a bowel movement.

And these spasms can effect the muscles in the chest causing the chostocondritis.

I had a really bad series of spasms this morning, right after I finished breakfast (and anyone who knows me will know, of course, it triggered a panic attack, and I've been taking stress meds all day !).

Your problem is in your back, rather than your chest, because of your herniated discs. But, some of my homeopathics might help you. I know they've virtually saved my life.

I use a product called Rescue Remedy for reducing stress- you can get it at any Wallgreens and most health food stores. It's frankly magical. It really does kill the stress impulses and helps your mind and body to relax, and that takes off a lot of the tension-oriented pain of IBS.

I use NatraBio's Arnica and Pain relief pills to reduce my muscle pains caused by CFS.

And every day, I drink a Kombucha tea - it's remarkable stuff, and it helps on a lot of levels. For IBS sufferers it helps as it is a digestive system regulator and I've found that my cramps and pains and other IBS symptoms have been drastically reduced since I started drinking Kombucha.

You might give some of these things a try, and otherwise, yes... it sounds like you've got CFS.... talk to your doctor about it... and see if you can't get some relief by following that route.

And keep in touch... I'd love to hear how you come out, and if you get to feeling better soon. And if there's anything else I can help with feel free to drop me a PM any time.

[Curls]

From a PT I was thinking very specific back exercises you can do in the house.  Water therapy would be for FM (and not for CFS.)  Good luck!

[dlhigh]

Thank you both for sharing your experiences and advice.
I've been through all the docs and back again twice so I guess there's not
much else to do now but wait and watch.  I do as much as I can on good days and as little as I can on bad ones.  I'm supposed to be scheduled for water therapy, but no one around my area does this, doc say and I am also scheduled to have a sleep study, but it's not until Jan 08.  
I'm still wondering why my neurologist writes out my meds for lyrica & zanaflex and then I go to a pain clinic for the tramadol and neither my primary or my neuro will write out all three and in order to have the tramadol increased I have to go back and see the pain clinic doctor who said he wouldn't need to see me anymore, that all my follow-up would be done by my primary doc.  I KEEP GOING ROUND IN CIRCLES.   Well anyhow, thanks again for all your help, both of you.

[Curls]

Hi dlhigh :).  If either diagnosis fits, then it sounds like it's CFS, not FM.  The reaction you're having, to exercise making things worse is a CFS one.  In FM exercise seems to help keep you loosened up and serotoin up to inhibit pain.  In CFS very, very mild graduated exercise can sometimes help, I'm talking 1 minute a day and then working up.  

However, you are right that it might not be either one, and just a pattern from the rest of your problems.  If you look up the post excertial maliase for cfs and see if it sounds like that muscle and cognitive and stiffness rebound effect, or if instead it's a direct response of increased pain from your disk problems when you exercise (which wouldn't be CFS related).  Joint pain in two joints isn't FM, nor are hernatied disks.  Not unless hypermobility syndrome (Elher-Danos) is causing the ligaments to be too stretchy and not do their jobs (it's common in cfs/fm patients - although most doctors dont' know that, and it looks like super tight muscles by the time one's diagnosed, not hypermobile muscles).  (If you decide that's involved I'll PM you a specialist.)   Leg problems with all your back problems is natural sounding.  IBS, with so many back problems, sounds reasonable without having to fish for another diagnosis, since those muscles hold all that stuff in place, particularly since you describe the connection literally.

It's hard to find a good PT but one might help find the right exercises to strengthen your back and stomach muscles.  That can be super helpful in people I know with back problems of all sorts.  There are now doctors specializing in pain control who are much better than the average, but it takes a while to track one down.  Accupuncture helps some people (and not others), and it can be some sessions help and others don't.  Unless you are confident that the herniated disks are the source of the problem I'd get a 2nd opinion to be more sure.  I'm not sure what a spinal tap can show (not an area of knowledge for me).  With so many disks involved, I'd also make sure to rule out the very low chance (please don't panic, it's not likely) of cancer by asking the doctor if it's possible.  Also, some people have back stuff on MRIs that should cause terrible pain and doesn't, others have not much on MRI but lots of pain.  So there are other unknown factors, and some alternative system support like vitamins, or whatever else feels right, might just help.  Someone mentioned magnetic mattresses too, but that seems like for a different problem, but easy enough to try (available at some home/bath stores and dept stores).  Crochetya's suggestion to listen to your body is excellent.   Let it tell you what's working for you and what's not, and then listen.  Doctor's arent' in our bodies and don't always realize the connections.  

Hope it helps!  Feel better.

[Crochetya]

Hi!

It is now Sat. morning 8:30am, drinking my morning coffee and checking my email. I
read over some of your journal.

You need to do what your body tells you to. If that means that you need to cry do it, if you can't move for awhile, listen an be still, but when you do feel a bit better, take it easy and don't overdo. This is very hard to accept for me too. I was very independent, and I had no help from my family for things that happened in my home daily and I worked also. I didn't have a mom that I was close to. This is a big portion of my problem of acceptance. I am from the south, and everybody is touchy, huggy, and kissy. I am from a large family of 10 siblings, numerous nieces and nephews, great ones and great great ones. Some of them talk with their hands (cajun u know) and yes it hurts, I cringe, then, they want to know what's wrong, that's when I tell them. Regardless of how many times you say so, they won't remember or they don't believe the pain is that bad.  I can relate to what you are saying.  I am so glad that I found this site.

About the thyroid.... I am waiting to see an Endocrinologist on Dec. 4th. I hope meds
can help with this. I definitely don't want surgery. I am overweight now.  My Dr. wants me to be on a strict cholestrol diet. I watch not to eat some foods, but this is stress for me. It's like that is the only thing thats good in my life, the food. Take it as it comes, be in the present tense.  That's what I try to do, I can't always succeed, but I try.

I have decided to stay home with my 2 sons, their girlfriends and my husband. I will have limited food not a whole excess of things. My husband likes to cook, so that helps me alot. I enjoy cooking and baking when I am in the mood. I like doing this for
my family. I enjoy making the special things they like.  This makes me feel good.

Well, I hope I have helped you by sharing some of my experiences. Need to prepare for the LSU/Ole Miss game. Goooooooooo Tigers!!!!!  L   S   U !!!!!

If you want to email me at ***@**** any time!!