does this sound like fibro

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deme
Regular Member


Date Joined Oct 2009
Total Posts : 27
   Posted 11/6/2009 9:45 AM (GMT -7)   
I have some pre existing conditions which I have had for 14 years or more including migraines/chronic headaches which I have been put on disability for. I also have TMJ and Hypoglycemic.
After 7 years and over a dozen neurologists and all kinds of testing I never was prescribed a drug that not only didnt help but actually made it worse. After years of having the hypoglycemia and headaches battle each other I finally got a balance about 8 months ago. That's just a rough history.
 
I've been developing new things over the past couple of years that I put down as getting older or as preexisting things that were getting worse. Recently went to the doctor because the episodes were getting really bad. It's a lot like Migraine episodes in that it comes and goes and seems affected by weather, stress, and sometimes for no reason I can determine. I went in because I have been sensitive to the cold for years and if I get really cold it hurts now it's not that cold in fact I went through the whole summer and even though I had on enough clothes at times I'd sweat I was still cold and hurt and even if I was warm I would still hurt. Not a little hurt but horrible hurting all over I cant even stand to be touched and sometimes particularly my back will go into spasms if I'm touched kind of thing. Some days it's just gone and I dance a little jig and if my husband catches me he laughs but I'm just so happy to move and not hurt. Or I'll still hurt but its not that horrible hurting its at least tolerable. Drugs do not help heat seems to help and walking also seems to get rid of the all over stiffness.
 
My Dr. asked a ton of questions and seemed worried about things I have problems with forever that I never thought about and just off the wall things that I had but never put much thought into. Then she asked if any dr's had ever mentioned Fibro. I had never heard of it before and she sent me to a rhuemotologist. I kind of thought she was out of her mind and didnt even make the appointment. Then I had a really bad attack even when it got better I was walking hunched over and my son threatened to get me a walker. I whacked him on the shoulder and said thats not funny. He looked at me dead serious and was like well you been walking that for months. I realized then yeh I had so I looked up Fibro and made that appointment to the rhuemotologist.  Im a 41 year old female.
 
Anyways my last episode was so bad it scared my husband. I had strep throat once at christmas time and couldnt get out of bed santa actually came to my room and christmas day I couldnt open my presents even when my mom brought them to me. It was a lot like that, weak, ache, tired, chills, sweating, then throw in some extras. Sharp and/or blunt pains that would  come and go, muscle spasms in the upper back that send out shooting pains. The front part of the ribs where the meet at the bottom hurt when you took deep breaths or drank. Bottom part of the back had a constant felt like it was gonna snap. I get migraine's can last up to 2 weeks and the pain is bad enough I'll pass out. I'd rather have the 2 weeks of that than the 3 days that this whatever it is lasted.
 
Well my husband is so worried that he's got his mom going to the doctors with me and she thinks the rhuemotologist is a waste of time thats its a nerve disorder or a blood clot. I actually like him he gave me CoQ10 which is the only thing I've ever had a dr. give me that helped with the constant  pressure I have with my head and it's actually cleared up my vision problems that I had just put down as I was getting older.  And he found I have a  serious Vitamin D deficiency I just started taking vitamin D so I dont know yet if that's going to help anything. Anyways my mother in law and the rhuemotologist pretty much talked over my head. She pretty much told him it couldnt be fibro because it wouldnt cause me to hurt to be touched anywhere and he pretty much told her yes it could and then she told him it wouldnt cause the problems I have with memory (which is horrid btw) and he said actually yes it could but he wanted to go through a lot of testing to rule everything else out. I figure I'll stick with him and go see a neurologist for the things she's worried about. But between the headaches and this I have a lot of overlapping things I cant quite sort out what is causing what and I between the problems I have thinking what with the migraine, vertigo, and this I dont always think real clearly.
 
I figured I'd come straight to the source and ask people that do have fibro if it sounds like it to them. My apologies for it being rather long, I'm just kind of wondering if I'm on the right track with this or chasing  something up the wrong tree. I would also say thanks reading through the forums I found some really helpful information and everyone here seems like a great group of people.
 
 
 
 

WhiteChocChip
Regular Member


Date Joined Jun 2009
Total Posts : 439
   Posted 11/6/2009 10:27 AM (GMT -7)   
I'm gonna quote some of your phrases that could have come exactly from my own experience with Fibro and give some comments:

"comes and goes and seems affected by weather, stress, and sometimes for no reason" " Some days it's just gone and I dance a little jig and if my husband catches me he laughs but I'm just so happy to move and not hurt."
This is the reason people think we are faking it.

"in fact I went through the whole summer and even though I had on enough clothes at times I'd sweat I was still cold and hurt and even if I was warm I would still hurt."
I used to keep my heater on full blast even in the summer. I am NEVER warm enough unless I'm in the sauna or a hot climate.

"horrible hurting all over I cant even stand to be touched"
this part's hard on our husbands when they just wanna make us feel better isn't it?

"heat seems to help and walking also seems to get rid of the all over stiffness"
agreed. my favourite thing to do is to take a nice gentle walk and then have a soak in a hot bath or a sit in a warm sauna. Also try some stretching. I kind of created my own stretch session inspired by Yoga and Tai Chi where the poses flow one after another and if you would like I'd be happy to describe it here for you.

"The front part of the ribs where the meet at the bottom hurt when you took deep breaths or drank."
this sounds like Costochondritis. I don't know if Costo is connected to the breathing problems I have, but the Fibro affects my lungs so that I do get short of breath sometimes.

"Sharp and/or blunt pains that would come and go, muscle spasms in the upper back that send out shooting pains."
this sounds exactly like a Fibro Flare ... though mine are usually in the hips and shins.

"Memory problems" ... it's called Fibro Fog :D My co-workers were amazed that I could remember the names of some medications, but not the names of the pieces of equipment we used every day.

I get headaches too, but I think those are from some combination of stress/teeth grinding/dehydration. They don't respond to medication either.

The wierdest thing that hurts me is sneezing if I'm laying on my back.

I rarely take meds, but when I do it's Tramadol for the pain ... it works great, but it's a narcotic so I can't drive for about 5 hours after taking it ... and robaxin for the spasms. I also have Naproxen if the pain's not too bad. I'm just stubborn and pretty much won't take meds unless I don't have the opportunity to lay down until it's better.

To me, it sounds like a Rheumy is a good place to start. He will most likely order a bajillion tests ... srsly you will feel like the tests will never end ... to rule out everything else. Once he's determined that you don't have any of the other things that cause those symptoms, then he will consider Fibro.

It's great that the CoQ10 is helping you. There are also other things out there that can help. I used to take Bromelain and some joint supplements, but ask your doctor before adding anything to what he has already given you.

I get that your hubby wants someone with you in case you get a real bad migraine and can't drive, but if you are old enough to be married, you are old enough to make your own decisions regarding your health. It doesn't really matter what your mother in law thinks is the problem. Unless she is a rheumy ... she has no business trying to interfere with the Doc's treating you. You can give her an ultimatum: IF she continues to interfere, THEN she can wait in the waiting room! You're not a minor ... I imagine ... therefore you don't need an adult present. Oh yeah and since your regular doc SENT you to the rheumy ... I'd consider it worth it to investigate your problems that way.

Don't forget to read Fibro 101, and join us for chat nights!

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 11/6/2009 10:58 AM (GMT -7)   
HI, Deme, and welcome!  I think White Chocolate Chip just about covered it.  You have many things that people with fibro have but fibro has many of the same symptoms as other illnesses.  The rheumatologist will do tests to rule out other illnesses...just to make sure. 
 
Be sure to check out the Fibro 101 thread...the first thread on the forum.  There are links to good information about fibromyalgia and you just might see yourself there.  There is a list of symptoms there too and you will see that you mentioned quite a few of them.  Also, there is a link about Vitamin D because many with fibro have a vitamin D deficiency.
 
Let us know what you find out.  We really do care.  Don't hesitate to ask questions because we are here to help you.  I'm so glad you found us and joined in and I hope to hear more from  you soon.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


deme
Regular Member


Date Joined Oct 2009
Total Posts : 27
   Posted 11/6/2009 11:15 AM (GMT -7)   
Thanks for the feedback. Normally with problems I like to handle it on my own in my own way. And find ways to work around problems. But between the memory problems and the drunk feeling I get with vertigo both of which seem worse with the change of seasons my thought processes hanvent been the best. So I've been double checking myself to make sure I'm staying on track.

I really appreciate the input!

cat8201
Regular Member


Date Joined Nov 2009
Total Posts : 135
   Posted 11/6/2009 10:18 PM (GMT -7)   
U basically described exactly how I feel. I'm 27. I have fibro. I also have spinal stenosis, severly, in the cervical (& lumbar) spine & that plays a huge part in my migraine's.

I relate to u n that I thought for a while I was having migraine episodes. I knew I had fibro, but mine was not severe until after a medical trauma. I have classic migraines with aura & I've tried everthing imaginable. I take imitrex & treximet now, but my pain meds took them from 2 x's a week...some that lasted 2 weeks to 2 a month. I however have experienced paralyses, I usually lose part or all of my vision, or I see dots. Sometimes I have the visual without pain, but not so much anymore. But the migraine's caused all that, however the fibro adds:

I'm a toucher..or I should say I was. I truly dread social functions where ppl want 2 hug. I do good to cuddle w/my son.

I have /did have very painful female problems.

I sleep for 2 weeks, then don't sleep for 2 weeks. Sometimes I sleep for a few days @ a time & I always always feel exhausted.

I am very sensitive to cold & hot.

My body feels like my bones are being crushed, and right now, I spend most of my time in a "flare up".
I'm losing my mind, I was. 4.0 college student w/ a wonderful memory..now I regularly can't think of words and feel spaced out.

I have always had a lot of vertigo, it even causes nausea now.

That is some, but I'm in a fog right now cuz I'm tired. Let me know if u have any questions or want to talk more. Let us know how u r doing.

O and I have really bad tender points in my neck & back & around my legs r my most sensitive.

& they nailed it for me..above except I do not have the chest pain, that and the frequent urination are the only 2 out of....tons..that I did not have when they physiatrist diagnosed me, for the 3rd but very formal time. (I was dx'd n college, but she didn't want it on paper cuz I wasn't bad, then pcp, then fibro specialist who is a physiatrist)

I'm also deficient n vitamin d. I would follow the rheumy, sounds like good dr. And a lot of things ur mother in law said to the dr r the main symptoms of fibro. It is easily misunderstood, w/the "faking it" being the worse of them all for me.

cat8201
Regular Member


Date Joined Nov 2009
Total Posts : 135
   Posted 11/6/2009 11:15 PM (GMT -7)   
O & another important one is that I have cold sweats daily. I mean wide awake teeth chattering chills, sweating, but freezing. But I have surgical menopause so I wonder how much of that is hormonal. But even b4 I had a hysterectomy last year, I was always cold. At my old job they used to always say I had "ice for blood". Lol & my body temp is never 98.5 unless I have fever. It's usually 96.2.

cat8201
Regular Member


Date Joined Nov 2009
Total Posts : 135
   Posted 11/6/2009 11:15 PM (GMT -7)   
O & another important one is that I have cold sweats daily. I mean wide awake teeth chattering chills, sweating, but freezing. But I have surgical menopause so I wonder how much of that is hormonal. But even b4 I had a hysterectomy last year, I was always cold. At my old job they used to always say I had "ice for blood". Lol & my body temp is never 98.5 unless I have fever. It's usually 96.2.

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 11/6/2009 11:24 PM (GMT -7)   
Hi Deme!

And welcome to our Fibro Family! You sure have received a lot of good information and experience already. As I read through your first post I kept nodding my head...yep, that's likely fibro, yep, that one too. None of us are doctors but we do know what fibro feels like! As long as your doctor is eliminating other disorders and then diagnoses you with fibro, then I think it's very reasonable to accept it and trust the doctor.

As for mother-in-law, I'm guessing she flat out does not want you to be sick! I'm not sure why except for the obvious...who wants a loved one to be sick? My former MIL had different reasons for something like this. If I was sick then SHE didn't get all of the attention so she would always blow off anything that happened to me...lol I'm not saying your MIL is doing this, just that there are a lot of reasons why a family member wants to diagnose others in the family. But is isn't serving her any purpose to already decide what you have before your doctor comes up with a good diagnosis. You should have a good talk with hubby about this...in a very loving way. She likely means well but she needs to be open to what the doctors are telling you.

One thing I would do if I were you is to keep a pain journal for a while. In the FIbro 101 there is a link to a free journal page. Here's the link...
www.painfoundation.org/learn/publications/files/TargetDailyLog.pdf

You print one page for each day and fill them out. Try not to miss too many days because this will give you a good view of what your pain and other symptoms are like hour by hour, day by day, week by week. But even more important is you will take it with you to each doctor appointment and ask them to review it while you are sitting there. This is one of the best ways they can see your symptoms and if they do prescribe any medications is will show them exactly how they are or are not working to control your pain. This only take 3-4 minutes a day but it can make your life worth living by getting great medical care!

You are not alone now. Even if you do not have fibro and find it's something else you can come over the the Chronic Pain forum or any others on Healing Well and find wonderful people who will be right here when you need us. It's how we are!

Hugs,
Chutz
The three grand essentials of happiness are: something to do, someone to love, and something to hope for. — Alexander Chalmers

(\o/)Co-Moderator Fibromyalgia & Chronic Pain Forums
(/|\)
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


Littleneck
Veteran Member


Date Joined Mar 2009
Total Posts : 599
   Posted 11/7/2009 3:46 AM (GMT -7)   
Hi Deme, your story could be me! I am also 41 and your symptoms are exactly like mine. I was just diagnosed a few months ago and have spent most of the year in a really long flare. It's easing up somewhat as I started taking Tramadol a couple months ago, along with an antidepressant (Cymbalta), gabapentin (1500mg), and a muscle relaxer (Baclofen). Some days (like yesterday) are great and some days (like today and our first snowfall!) are horrible with crushing pain and fatigue.

You described your coldness and cold sweats exactly as I feel them. I started taking Vitamin D a few weeks ago and I can tell they are working already because the pain is more manageable. Like it's eased up. So I can definitely say they make a great difference. I also take omega-3 fish oil and malic acid/magnesium supplements. Good luck and keep us posted!

Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 11/7/2009 7:52 AM (GMT -7)   
Hi Deme and welcome. I agree, I think the rheumy is on the right track and needs to rule out all the other things it could be for you to get a dx. I didn't know anything about fibro either til my GP did the tender point test one day and told me to go home and research fibromyalgia. I knew as soon as I started reading the symptoms I had it and it was devastating at first to have something there was no cure for but we adjust.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
 
Vit D/calcium


cat8201
Regular Member


Date Joined Nov 2009
Total Posts : 135
   Posted 11/7/2009 7:57 AM (GMT -7)   
O & another important one is that I have cold sweats daily. I mean wide awake teeth chattering chills, sweating, but freezing. But I have surgical menopause so I wonder how much of that is hormonal. But even b4 I had a hysterectomy last year, I was always cold. At my old job they used to always say I had "ice for blood". Lol & my body temp is never 98.5 unless I have fever. It's usually 96.2.

cat8201
Regular Member


Date Joined Nov 2009
Total Posts : 135
   Posted 11/7/2009 8:03 AM (GMT -7)   
I'm sorry for the multiple posts, I'm in the woods, cuz the boys are hunting & I'm using my phone..it has been telling me that it didn't post. Sorry, just wanted to let u know I'm not that crazy..lol
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