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Kiwifruit

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:)Hello!

I had been having really bad migraines (pain in my left eye and left frontal lobe) a few times a day, plus when it started I was fatigued and had tingling down my spine and left arm, and numbness in my left hand, and very bad tremors in my left hand. I also felt very weak and faint after a shower or bath (or any exposure to warmth such as taking a tropical vacation). The doctor said it is probably fibro but ran blood tests just to ensure that it wasn't related to the thyroid, or lupus etc. Everything came back clear and my iron and vitamin levels were good.

My doctor referred me to a Rheumatologist but I had to wait 2 months for an appointment. In the meantime I researched fibro and read the forums and felt that it sounded nothing like what I have. I don't have pain in any of my muscles or body (except the migraines), no muscle tension, no stiffness, no sore pressure points, my joints feel good and my shoulder muscles are relaxed. Stress-wise I would say my stress levels are maybe 3 out of 10 (I don't have a job because my husband was transferred to a small town and since the houses are very cheap we didn't need the extra money from me working as well. We can't have kids so its just us. The main source of stress in my life would be loneliness and maybe boredom). I am aged 33.

Anyway, a month after the hand tremors, fatigue etc started, it suddenly stopped. Within one day the tremors just disappearred and I was completely normal again except for the migraines which I still get.

I went along to the Rheumatologist and explained the symptoms that I'd HAD (which were no longer present) and he looked at my un-trembling hands like I was making up stories. He said I have Fibro even though I had no reaction to the pressure point test, have no muscle tension etc. I told him Fibro sounds like the exact opposite of my problem - my muscles are very relaxed and I never feel pressure point pain. In fact, I have a high pain tolerance and never complained once when I had my wisdom teeth pulled out. The Rheumo said that Fibro has a very spectrum - some people have pain all over their bodies and others have no pain and no muscle tension. I said "What kind of disease presents with a list of symptoms OR the exact opposite of those symptoms?" but he ushered me to the door after that. He gave me amitriptyline and its helped my migraines (they feel about 50% better after taking 10mg a day).

:confused: So has anyone else been diagnosed with Fibro but has completely relaxed muscles and no pain in their body? And has anyone else had symptoms that lasted one month and then just disappeared again? It sounds to me like Fibro lasts longer than that.
:confused:
The Optometrist said that migraines can cause tingling, numbness and fatigue.
 

nascarmike

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Kiwifruit I would get a second opinion if you have doubts. One of the things about fibro IS wide spread constant pain. I'm not a dr. but it does sound odd. Good luck.
 

Kiwifruit

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11/2013
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Kiwifruit I would get a second opinion if you have doubts. One of the things about fibro IS wide spread constant pain. I'm not a dr. but it does sound odd. Good luck.

Thanks for the reply Mike. I thought my doctor would send me to a neurologist since they deal with migraines, but because he suspected its fibro he sent me to a rheumo instead since they specialise in fibro. I thought the rheumo would agree it isn't fibro once I confirmed that I have no pain or stiffness, and no pressure point pain, so I was very surprised when he said it is fibro.
I've been reading all the forum posts and I just don't feel like I fit in with fibro. I built a greenhouse last week using 2 by 3 timber and used glass windows, which is really heavy work (circular saws are heavy tools). I also built a bench seat using decking timber. I had the usual minor muscle stiffness in my biceps and back as you would expect from heavy lifting. It healed after 1 day. I can't imagine what it would be like to have muscle pain that lasted longer than 1 day after heavy lifting. From what I've read on the forums it sounds like if I had fibro I would avoid building in my spare time due to muscle pain and fatigue. Building is my favourite hobby.
I often feel down over winter when I can't get outside to grow food and build things, so twice in my life I've taken anti-depressants over winter. I wonder if the doctor had a preconception that since I've taken SSRIs before then my migraines must be caused by fibro? He wasn't really listening when I was explaining the symptoms.
 

Siderea

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231
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10/2013
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Have you tried chiropractic care and acupuncture? Migraines are often caused by subluxations in your spine, and a few weeks of Chiropractic care could be enough to loosen the nerves in your spine so they work well again. Chiropractic care and acupunture have been the single two most helpful treatments for my pain, but cutting dairy and wheat out of my diet helped a ton too (especially with inflammation and sleep problems.)

It might be worth trying something like yoga too, which can loosen up any nerve issues and get the blood flowing properly again.

I've spent over $5,000 on doctor bills with no real answers other than a diagnosis of fibro, arthritis, and chronic fatigue. The fibro is just a guess. I was prescribed Cymbalta, which made my life a total nightmare (horrible side effects!) The only relief I've had is from Chiropractic, acupuncture, and diet. There are no side effects to trying a more natural route to relief! Although it does take a lot more effort than just popping a pill, but that's okay.
 

Kiwifruit

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11/2013
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NZ
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Manawatu-Wanganui Region
Have you tried chiropractic care and acupuncture? Migraines are often caused by subluxations in your spine, and a few weeks of Chiropractic care could be enough to loosen the nerves in your spine so they work well again.

That's a really good idea. I worked with a woman once who said she used to lie in a dark room for a day at a time when she had a migraine, but after the chiropractor cracked her neck she felt like a new person. No more migraines.

I've read on the internet that spring can induce migraines (its spring where I live) because of the sudden increase in sunlight and outdoor activity after spending months inside during the dark of winter.
 

1sweed

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Feb 4, 2013
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1,956
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DX FIBRO
Diagnosis
01/1995
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US
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For some people fibro symptoms move in and stay with no relief. In other people they come and go, often moving from one area of the body to another and causing discomfort and pain, or stopping for long periods of time. But I can understand your frustration in dealing with your doctor. Are you able to see a different doctor on your own or do you need to be referred where you live? Here in the US, it depends on the insurance policy one has. There are different types of hand tremors that go along with certain diseases and also stress can cause tremors.

If you have concerns then a neurologist might be the next doctor to see. There are many diseases that start with the same kinds of symptoms, but some can take years to develop. Ones like MS or Parkinsons, different muscle diseases and arthritis spinal conditions. Remember each doctor you see anymore has his own speciality, and often they don't think it is necessary to refer patients if bloodwork comes back normal. And in some cases their own ego stands in the way.

If your condition gets worse try and find another doctor who will refer you or at least give you a straight answer as to why they won't do it. If your condition stays the same then try to wait it out a bit to see if any new symptoms develop that would give you cause to go to another specialist. Hope this helps a bit it is hard giving advice long distance.

Let us know how you make out. Okay? :)
 

Kiwifruit

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Thanks Sweed. Both the doctor and specialist are older men (maybe 70?) and I often feel like older male doctors think of young women as some what emotional rather than rational. My father is a doctor and back when he was accepted into med school it was all about the high grades and the prestige of being a doctor. Times have changed a lot and now the med schools expect candidates to be sympathetic with great communication skills. I find that older men sometimes think they've seen it all after 40 years of medical experience and hate to be questioned. It would nice if the patient's health was the priority rather than their ego! When I lived in the city I had a good female doctor, but there isn't one in this town.

The specialist had asked if I have any family history of Parkinsons or MS etc. I don't, but I remember from when I did my science degree that MS has low genetic inheritance (Parkinsons can have a strong family link though).
 

nascarmike

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Kiwi my wife goes through the same type of crap from dr.'s here as well the ego is tough for them especially when you challenge them. You know your body better than anyone go with your gut that's my honest feeling. Good luck.
 

Kiwifruit

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When I was a child I remember how much respect people gave my father when he said he was a doctor. They'd tell him how intelligent he was and ask for his advice and listen when he spoke. No wonder doctors develop such egos after decades of that treatment! Especially in those days when there was no internet so people couldn't compare and research their symptoms (or question them).

I'd feel a lot better about the fibro diagnosis if I could find a single other person who has no muscle or joint pain. Fibro sounds utterly awful. My ocular migraines and left hand tremor seem like nothing to complain about in comparison.
 

Khaleesi

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Nov 10, 2013
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07/2013
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PR
Hi Kiwi!

When I was your age I went through similar symptoms, specially the migraines. I went to a neurologist and he prescribed a migraine medicine and put me on anti inflammatory injections for two or three days. He told me to eliminate from my diet aspartame, glutamate mono sodium, no fasting, no Chinese food since it has msg, and no caffeine. He asking said to sleep regularly and to watch if the migraines were related to my menstrual period. I didn't do the caffeine while I was in that crisis but when I got better I continued drinking soda. I improved. In fact, I still get migraines sometimes but sporadically. Hope you get better! I would find a second opinion, if I were you...

Good luck!
Khaleesi
 

Trfielder

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I have a couple of friends with ms. You sound a lot like them..I'm not say that that is what you have..but very similar symptoms and ms can come and go for years before it gets worse...PLEASE get another opinion!
 

Kiwifruit

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Thanks Trfielder. I have a lot of indicators that suggest I am risk of MS. I have English parents and very pale skin, I grew up on a rural 80 acre farm (many scientists believe MS is high in rural areas due to childhood exposure to pesticides), the farm was in the South Island which is really, really far from the equator (MS strongly correlates with distance from the equator), and MS is most common in females and is diagnosed around 30 years old on average. Also I was in a serious accident as a child (some scientists believe MS is triggered by childhood trauma involving the central nervous system).

I listed the above but the Rheumo just said that MS doesn't involve eye pain (ocular migraines) so it can't be MS. Even though I've read studies that suggest 60% of MS people have migraines in conjunction with MS, compared to 10% of the regular population having migraines. My symptoms lasted one month and then disappeared except for the migraines (I've read that MS tends to attack for 3-6 weeks in the early stages of the disease). I can't find any information that suggests that fibro starts and then abruptly ceases after a month. I thought the definition of fibro was that it's chronic rather than quick to appear and disappear?

I feel a bit too embarrassed to visit a Neuro after my experience with the Rheumo.
 

1sweed

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01/1995
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Pennsylvania
I can only talk from my own experience, and since I have the fibro diagnosis I have to stick with that one in this reply. In the early stages of this disease I was bed ridden many times for a month or two, then one morning I would wake up and all was well. It was frustating because my family doctor thought it was MS, and sent me off to neurologists. They did MRI's and even spinal taps, and said no MS.

I remember one time my legs and knees hurt so bad I could barely walk for three months. We were window shopping for wheelchairs and my spirits were very low. One day I was sitting in my chair and felt the pain pulling out of my muscles like as if someone grabbed a hold of it and was slowly pulling it out of my body. First my lower legs and then my hips, and my arms as well. When the feeling went away I stood up and walked with no pain. I always figured the cure came from prayers, from all my friends. It was strange and yet exciting and scary.

So what you read often as little to do with your body and its reactions to illness. I would try very hard to see a neurologist, to at least get that opinion and some peace of mind. Could your dad help you? :)
 

Christine64

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Sorry. Your Rheumatologist sounds like he's just phoning it in. I personally have little patience for condescending doctors. I'm glad you're feeling better.
 

Trellum

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Jul 17, 2013
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04/2011
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NL
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NL
I'd definitely go get a second opinion, I've suffered from hand tremors, but pain is something that has been present in my life since I was a teen. If I were you I'd really see a totally different doctor, have you seen a neurologist? If you haven't, maybe now is the time! I think you would benefit greatly from that. You need to check why you have hand tremors.
 
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