Migraine? Fibromyalgia? Both? Do I have the right diagnosis?

Specific Illnesses & Conditions
1

After nearly three years of this craziness, could it be that I have the wrong diagnosis? I do experience classic migraines, so there is no doubt that I have a migraine brain. However, I’m now wondering if the vertigo, brainfog, tinnitus, and all the other crazy symptoms are fibromyalgia instead of migraine. There is a part of me that thinks MAV, fibromyalgia, chronic fatigue syndrome and other similar conditions are one and the same with some variation in manifestation. This theory is based on the fact that the same neurotransmitters are considered to blame for the conditions and the symptoms are very much overlapping. However, given today’s definition of migraine versus fibromyalgia, which I have never researched before now, I am wondering if I’ve been misdiagnosed. I’m going to check into this once I find a decent Internist in town.

Here is my thinking. In my attempts to get to the root of my problem in order to find a way back to normalcy, I’ve also been diagnosed with narcolepsy and TMJ disorder. Through my incidental research on fibromyalgia after learning my neighbor has it, I’ve discovered migraine, TMJ, and sleep disorders are all common with the syndrome as are nearly all of my migraine symptoms and the chronic muscle pain I experience, especially in my neck and back. I’ve lived with the muscle pain for so long that I thought it was normal for someone of my age and experiences.

Much of my regimen for migraine also is supposed to help with fibromyalgia so it makes sense that I have improved: SSRI, anti-seizure med, magnesium, fish oil, Vit Bs, etc. And, I just discovered Adderall works wonders for many folks with fibromyalgia. Well, a low-dose of Adderall (10 mg/day) has been a godsend for helping with my brainfog and fatigue. It is officially prescribed based on my narcolepsy diagnosis, but I asked for it initially to deal with my migraine symptoms.

I am curious to know if any of you have any insight or feedback on the latest medical rabbit trail I’m heading down.

Marci

2

I would be very interested to hear about your findings as I am wondering the same thing as of late. My MAV was diagnoised in 2008 by an ENT and then one of the neurologist (I have seen five now said he thought that is what it might be). But many of the other symptoms I have now or have developed over the last few years do not seem to fit to me.

Mine started with the dizziness, waviness, rocking but that has calmed some now but I do have what I refer to as an internal shaking at all times. In addition to that I have what I refer to as random pains all over one day it is my leg, next day may be my arm, abdominal and the list goes on and on. I have a lot of pain in my neck and back and spasms in both. I now have twitching in the eye and have had the tinnitus of and on since this started two years ago.

But the worse and latest symptom is the fatigue overwhelming to the point of not being able to hardly make it thorough the day.

Now I think some of this is hormonal though my test say otherwise…I think we women know our bodies and what is “normal” and what is not.

Please tell me more about your circumstance and what you are doing as I am always searching and hoping for new solutions …

I am currently taking VitB12, Vit B COmplex, Calcium and Magnseioum supplement, (need to start taking it at night as I was told it can make you sleepy) Vit D3 and a very small dose of Valium.

The fatigue has been so bad the last few weeks and the neck pain also…I have had a few migraines over the last few months and have treated them with abortive medication when they got really bad.

I am trying to add "good " foods to the diet am having to learn what I can eat that does not bother my stomach.

Write back when you have a chance.

3

Timeless,

I made an appointment with a new primary care doctor for Tuesday. He came recommended to me and I’m optimistic he will be a good fit. I don’t know if he knows much about fibromyalgia. If he doesn’t I will ask for a referral to a rheumotologist.

The criteria for diagnosis are:

  1. Widespread pain lasting at least three months
  2. At least 11 positive tender points — out of a total possible of 18

I know I am aching and sore everyday, but I don’t know if it is fibromyalgia type pain. It isn’t bad enough to keep me in bed; it’s just irritating and frustrating. As for the tender points, I’ll have to wait for the doctor to test me. I certainly have tender points, but I don’t know if they are the specific test spots.

As for the other symptoms of fibromyalgia, I have them, but they could be from migraine and/or something else. In some sense, the diagnosis doesn’t really matter, but finding the right one may help to find an even better path to recovery. I’ll keep you posted…

Marci

4

Marci,

I’ve had this same thought a few times now over the years most recently about 3 months ago when I had non-stop aches and pains that wouldn’t quit. The thing is if you read about the symptoms associated with migraine, fibro and chronic fatigue, they all have overlap. Sometimes I wonder if I have both chronic fatigue and MAV and then other times I think it’s fibro.

For example, right now I’m getting hit with a medium grade attack here in Toronto. I was wondering why I was so good this time compared to last September when I really got trashed days after my arrival. I thought maybe taking valium was saving me this time but I am certain now that while it may be a factor, it’s not the main reason. Last year on the second day, I was in NYC and walked and walked and walked that day – miles and I was physically worked out. Yesterday I did a similar thing again but not so much in Toronto for a Caribana Festival. I must have walked about 10 km. Last night at dinner I started feeling screwed up and distant, conversation was an effort and my “spark” was gone. All last night I woke in the night with heart palps and had crazy tripped out dreams and today I have vertigo and look and feel terrible – like a heavy duty flu has descended. Do you get this happening at all? Of course I ache too but not too bad and nothing an aspirin won’t sort out. This attack is mild compared to last year because the physical exertion yesterday wasn’t nearly as much as NYC. So is this migraine or chronic fatigue or both? Isn’t this what happens to people with CFS? They do some exercise and then they are wrecked for days afterwards. I haven’t done much aerobic activity over the last 2 months so I think yesterday has hit hard.

Meanwhile I was so envious of my brother who is 7 years older than me and had just cycled 130 km from his house to visit here yesterday on route to the east end of Lake Ontario. All up he’s going to cycle 350 km in 3 days. I walk about 5 and I am a basket case. It makes me so sad and pissed off. There’s nothing I’d like more than to be able to join him on a ride like that but I can’t. I used to be able to that stuff without a second thought. What happened? :frowning:

Scott

edit: just found this on Wikipedia:

[size=150]Exercise intolerance[/size] is a condition where the patient is unable to do physical exercise at the level or for the duration that would be expected of someone in his or her general physical condition, or experiences unusually severe post-exercise pain, fatigue, or other negative effects. Exercise intolerance is not a disease or syndrome in and of itself, but a symptom.

Since there are many possible specific reasons why exercise could be inhibited, this is a rather slippery term. For instance, the patient may experience unusual breathlessness (dyspnea), muscle pain (myalgia), or increasing muscle weakness while exercising, or may, after exercise, experience severe headache, nausea, dizziness or extreme fatigue. In most cases, the specific reason that exercise is not tolerated is of considerable significance when trying to isolate the cause down to a specific disease.

Check this out Marci: http://www.healthline.com/adamcontent/fibromyalgia

I have all the symptoms listed at the bottom of page 1. Fits me to a tee such as palpitations, sleep problems, morning pain and stiffness, anxiety and or depression. Does this also fit you? I’m so ****ed off about this today that I’ve decided to try and find someone in Sydney on my return who can help me with this. There has to be some sort of treatment or special exercise treatment to minimise this. I bet they’ll say “take an SSRI”.

5

Hi Scott,

Yes, I have all of the symptoms too plus some others I have read elsewhere such as tinnitus, tender lymph nodes in my neck, premenstrual syndrome and painful periods, sensitivity to odors, loud noises, bright lights, some foods, and weather changes. I have had sleep and stomach/bowel issues for most of my life and I’ve had tenderness in my neck and back and period issues since my teens, so I never thought much of them until all of the my other symptoms piled on. For me, the brainfog and fatigue are the worst now that the vertigo has calmed down and is only intermittent. I believe the determining factor for me on whether I have fibromyalgia or not will be whether I have enough pain at the tender points used for diagnosis.

Here is a more descriptive symptom list: http://www.fmnetnews.com/basics-symptoms.php

I don’t meet the criteria for chronic fatigue because I haven’t had the fevers and sore throats common with that. Have you?

I’ll let you know how my appointment with my new GP goes today. I don’t know if he knows enough about fibromyalgia to make a diagnosis himself or if he will refer me to a specialist. I’m guessing the latter.

Take care of yourself and enjoy the rest of your trip!

Marci

6

Marci,

Please let us know what your doctor says or if you have to go to a specialist.

I found the following information online…and yes it sounds like all three of the conditions can be very over lapping.

I now have pains daily that I did not have when this all started. Plus I like Scott when I try to push myself just a bit to do something “normal” then I pay for it so dearly. I went to Walmart yesterday for an hour and by the time we got home I was a mess. The brain fog, anxiety and pain was terrible. Is that migraine? I am not sure or do I have more than one thing/illness going on here.

I am so sadden and angry that I can no longer do the normal activies I once did but more than that the very minimal normal activities are making me so tired and bringing on all of these added symptoms. Pain in the chest , pain in the arms, burning sensations in the back and terrible fatigue. There has to be some way to sort all of this out and to have some means of assisting us have a more normal life.

Please let me know what you both find out…and yes Scott I read SSRi’s are one of the treatments but surely there are some other things that can be done to make it better and ease the pain.

members.tripod.com/~ms_stix/fibro.htm

fibromyalgia-symptoms.org/fi … tment.html

fmaware.org/site/PageServer? … a_symptoms

7

I AM VERY EXCITED ABOUT MY NEW PRIMARY CARE DOCTOR!!!

He is absolutely the best doctor I have ever seen. He has committed to me that he won’t give up trying to help me figure this out. He takes a complete family history and personal background. He is in the same office as my previous doctor, so you would think he would have all that information. Well, apparently my last doc only entered tidbits of information, so he took the time to fill in the gaps. He started by asking me what my most annoying symptom is, and I told him the fatigue followed by the brainfog. Right away he started asking me whether I had certain blood tests before for things like Vit B-12, Vit D, and thyroid levels. He says I absolutely fit the criteria for a fibromyalgia diagnosis, but he’s not ready to go there yet. His plan for now is to go back through my records and put together a lab panel to fill in the gaps where my other doctor failed me (He didn’t say that; that is my interpretation :wink: ). He wants to make sure something as simple as a Vit B-12 deficiency isn’t to blame. He says that will wreak havoc on a person’s neurological system. If everything comes back normal from this round, then we’ll move on to something else, he said.

This doctor’s wife has been through two cancer battles and is dealing with the aftermath of a failed bone marrow transplant. He said he and his wife have had there own struggles dealing with doctors who give up when they can’t figure something out based on their current knowledge. He is the type of doctor who will dig in and spend nights researching when he needs to rather than just throwing another drug at you and sending you on your way.

I’ll be going in to the lab tomorrow or Wednesday. He wanted tonight and tomorrow morning to come up with a plan. I probably won’t get the results until late next week because he is heading to Washington, D.C. on a volunteer mission with a group of veterans.

HALLELUJAH! He may not be able to solve this mystery for me, but at least I finally feel like I have someone from the medical community fully committed to being on my team! :smiley:

8

Hi Marci, your excitment comes through loud and clear! And I don’t blame you. Finding a doctor like that is like finding gold dust. He sounds terrific. Hope you and he together can come up with answers. Really nice to hear something positive and hopeful. All the best.

Brenda

9

Hi everyone!

As you know, I do have both MV and Fibromyalgia and there is one other person on here too that has both too. I would be very interested in any research/stuff you can find as this has opened a new ‘item of interest’ on my fibro forum. I also mentioned the possible link to my ENT (and GP) and he says it’s very interesting although whether or not he’s going to look into it more I don’t know. Alot of my fibro friends are looking into getting diagnosed with MV so there may be increases in the numbers being diagnosed with it. It’s early days though!

On other news I saw a hearing therapist last week who thinks I don’t have hearing loss but have a disability where I cannot discriminate between sounds when there is a lot of noise which I then perceive as hearing loss. Getting tests done on my brain and cochlea and being signed up for a trial (LACE) which they are trying to get funding for. He doesn’t think it’s linked to my MV but that my fibro and MV will be having an effect on it.

Anyway, good luck to everyone with drs and stuff!

Marie

10

Hi Marie,

How are you able to distinguish between fibro and MAV for yourself? The symptoms really seem to overlap significantly. We could add CFS to the picture as well. The only reason I don’t think I would fall into the CFS basket is that unless I’m having an attack, I have pretty good energy. But I almost always have pain somewhere or stiffness and dysequilibrium comes and goes (which until recently I didn’t realise was associated with fibro – or is it MAV?). Some symptoms seem migrainous and others more like fibro.

This trip to Toronto is destroying me today. I think it’s all hit a peak. I was out at an old friend’s place last night talking for about 5 hours straight. Just sitting there. By the end of the evening I had a nasty headache and then another horrendous night’s sleep. I’m dizzy again now and can barely walk up a flight of stairs. My legs feel like they weigh 2 tons. Huge flu-like symptoms. It’s wrecking my holiday (again). Just can’t handle these trips where there is a big time zone change.

Where is your forum?

Scott

11

Marci – great news re the new GP. I need to find someone like that in Sydney. Keep us posted if you work out new ways to manage this s**t.

Thanks … Scott

12

Hi Scott,

Sorry to hear you’re feeling so bad and hope you get better soon xx.

To be honest the only way I know anything is different is because I don’t usually suffer from vertigo/dizziness and nausea and don’t usually have the funky vision either. Its hard to explain but I know when something isn’t fibro if you know what I mean. I’ve noticed that my anxiety goes through the roof a few days before the actual hit which never happens with fm. With FM you get no warning symptoms - the tiredness or pain or other symptoms just hit. Although the others on the forum will be able to describe flares more than I can. I’m chronic and suffer a lot daily so never know if I’m flaring or not.

The fibro forum I use is at

http://www.fibromyalgia-associationuk.org/community/index.php?board=5.0

and is extremely useful. Over the years we’ve spoken about symptoms and found things that we thought were unique to us as individuals are actually shared around as a symptom so I hope you all find it useful. They’re a friendly lot and always pleased to help. To be fair I’m not on it a lot as I know what works for my fm and what doesn’t. My problem with it now is that my body has been under stress for so long with it (I tried to maintain a ‘normal’ life by continuing working etc which has been hard) that it’s starting to cause a lot of other problems and secondary conditions.

I hope the forum helps.

Marie xx

13

Another twist…I received the results of some of my bloodwork. I have iron deficiency anemia and a low Vit. D level. Now I’m wondering how much of this misery is attributable to anemia. I’m pretty pissed at my former GP for not testing for this given my symptoms. I’m also pissed at myself for assuming these basic tests were included in the long list of tests that were done. It is amazing to me how many diagnoses have a similar set of symptoms. I won’t get my hopes up, but it will be astonishing to me if a simple iron supplement is the answer.

Marci

14

Hi Marci,

That would certainly be excellent news if an iron pill suddenly sorts out the energy problem. When I get back I might have a whole panel of tests done to make sure there’s not something simple missing contributing to this nightmare. Imagine if it were that simple? I so wish it were true. S

15

Hey Scott,

You looking for a specialist or just a really good GP? If the latter I can recommend Church St Medical Centre in Newtown (i.e., close to Sydney Uni). If you’re interested we can chat on your return.

Hope things pick up for you for the rest of this holiday.

Vic

16

Hi guys. I think I’m the “other” that RieABZ was talking about. I have MAV, fibro and cfs as diagnosed by 3 different specialist’s (neurotologist, rheumatologist and neurologist respectively) in 2008. None of them were interested in the other diagnoses - surprise, surprise!But I’ve always thought the 3 conditions are linked.
I have been on low (22.5mg) dose Dosulepin (tri cyclic anti depressant) since Nov '08 for the MAV and fibro and find it helps along with diet/lifestyle changes and exercise in moderation such as swimming and walking. If I have a fibro flare it presents as widespread pain (whereas normally I just have aches and early morning stiffness) and it’s especially noticeable in my joints and a burning sensation in my skin. As I try to pace, I know when I’ve done too much and to expect the symptoms to increase. Symptoms also worsen in relation to hormone changes and this is when the fatigue, irritability, brain fog and migraine symptoms are more likely too. Although I couldn’t work or drive for a year I can now work 3 days per week which a least helps me to feel a bit like the old me and a useful human being. I’ve fortunately never experienced depression but have the anxiety and frustration the conditions bring and find magensium supplements in the form of tablets and a spray on oil really helpful.
Maybe in the future they will discover a new disorder which encompasses the MAV, fibro, cfs and then progress can be made to find a useful treatment/cure. Think I’ll keep dreaming…

17

I have a few questions for those of you with a fibro diagnosis. Can you describe your pain? While I have neck and back pain everyday along with other bodyaches intermittently and I do wake up feeling stiff and aching each morning, I’m thinking my pain may be different from those with fibromyalgia. I have a deep, aching muscular pain that is temporarily relieved by massage. I’ve read that people with fibro don’t generally like massage because it is too painful to be touched. For me, the massage is painful, but it is a good kind of pain that brings temporary relief. My pain seems to come from tight muscles.

Does this sound different from fibromyalgia pain?

18

Hi Marci
For me the pain can present in a number of ways: shooting electric shocks, skin burning sensations, joint, bone and teeth pain and muscle spasms and tightening like I’ve over exercised. Fortunately the first 5 are rare and usually if I’ve overdone things. Generally I wouldn’t want massage although a gentle one doesn’t do any harm. I dislike heat and prefer cool weather and if in pain an ice pack on the part that is hurting. I also find climbing stairs and standing for long periods very difficult and exacerbate both fatigue and pain. As fibro is a dustbin diagnosis people present so differently. One thing the medical world do think is that it may be related to lack of deep refreshing sleep and once this is addressed symptoms often improve. This was the case for me and anything that disrupts my optimum 8 hours, results in worsening of the MAV, fibro and cfs symptoms the next day.
Hope this makes sense.