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Shelly

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Hello I am new to this group and so happy I found it. I am currently on a waiting list to see a Fibromyalgia specialist, so I have not been diagnosed yet but several doctors think I have it, so I am going to share my situation with you and see what you all think.
Sorry if this is long but it has been a long road for me, hope most of you will read it all.
Thanks.

I have had disc problems in my back for years and never thought alot about the back pain because I assumed it was from the disc.
Lots of pain in my sides and upper shoulders and neck. Pain under the breastbones and back of the head, lower back and buttocks.

Then about 6 years ago I had a gran mal seizure, had never had one before and had never had any symptoms of epilepsy. Had several MRI's, Ct scans and EEGs all came back normal.
Was put on seizure medication and left it at that.

About 3 years ago I started having this tingling/burning pain in my pelvic area right down my legs and into my feet. Legs would get so weak I would fall down and go numb that I could not feel them for a bit. Was admitted to hospital and had more tests done including Spinal Tap and MRI`s of the back and spine. They were checking for MS but all tests came back normal. Was using a walker and a cane for while as I had to gain strength back in my legs.

For years I have been having really bad headaches, and dizziness with nausea.

Started having bad eye pain and swooshing sounds in my head still going on as I type this(tinnitis I think it is called) and ear pain for the past several years.

I have been diagnosed with IBS and GERD.

Birsistis in my hips.

Burning headaches and pain down the back of my head into my neck and shoulders.

Severe fatigue, never feel well rested. Always feel exhausted.
Never can get a good nights sleep from all the pain I feel over my entire body.

I have lots of pain in my chest(sometimes feels like I am having a heart attack)
Had lots of menstral problems until I had a complete hysterectomy 2 years ago.
No interest in sex at all.

Dry skin, hair , mouth and eyes.

Panic attacks and anxiety for years.

Have been on and off anti-depressants.

No energy to do anything, used to love walking and being outdoors. Now I have so much pain sometimes I do not even go outside for days.

I feel like every part of my body has some sort of pain or problem with it.
I have not been pain free for over 6 years.

The worst part right now is the tingling in my feet and pelvic area, the headaches and exhaustion.

I have seen at least a dozen different doctors and specialist for all the different pains
and have had so many tests but everything pretty much came back normal.

Then one day my family doctor(she is a saint) said that she was looking at my chart (and believe me it is huge) and was looking at all my symptoms and things going on and said that she thought I might have fibromyalgia. I mentioned this to a couple of my other doctors and they all said they were starting to think the same thing. So my family doctor sent in a referral and as I type this I am still waiting for an appointment with the Fibro clinic about an hour away from where I live. They are saying hopefully I will get in by January 2014. So I just wait in pain and hope that tomorrow is a better day.

Thanks for reading this and to all those going through these same things, I feel your pain and hope and pray that we can all have a better day tomorrow.
 

Trfielder

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First of all I'm sorry you are suffering..good for your Dr to finally put it all together . You have a lot of the symptoms that many of us suffer, I'm not saying that you have fibro ( not a dr) but it sure sounds familiar . Are you on any pain meds to help you deal with it ?
My other question is where is this fibro clinic? I'm not far from Guelph and would love to find a clinic ( my Dr doesn't believe in fibro)
Thanks
Hope you have some better days.
 

Shelly

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No I am not on any meds for the pain just seizure meds but there are alot of side effects with that as well.

As for the clinic it is in London, Ontario
 

Trfielder

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CA
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Ontario
I know all meds have some kind of side effect.... Maybe discuss with your Dr even if you only take when you have to just to get some relief..I don't take any prescription meds I use alternative self meds... Don't feel like you have to take meds but you need some kind of relief...hot baths? My kids got me a heated mattress pad and it works wonders
 

1sweed

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DX FIBRO
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Shelly,
Welcome to the forum. I want to thank you for sharing all that you have been through, and I pray that this clinic will be able to give you some relief from your symptoms. So many of your symptoms match my except for the gran mal seizures. I had several seizure experiences that were partial and tonic type, and had many emergency ER visits before I got the diagnosis. But I am on meds and have been seizure free for over 8 years now, as long as I take my medication I will be okay. I hope your medications are keeping your seizures at bay.

Will you consider keeping us updated on how things go at the clinic your going to? This might give other members a place to consider trying if you do well with the doctors there. I am so thankful that you have doctors that are caring and working hard to find out what is wrong with you healthwise. It has to have been very scary for you.

We all care about you and hope that by reading posts and by posting here you will find things to help you deal with the symptoms that are troubling you the most. :) Glad you found us!
 

Shelly

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Thanks for your post and your kind words. I am having a really tough week, the pain is so bad I can hardly sleep I am taking adivan to calm my nerves and gravol for the nausea and that is the only thing that helps a bit and makes me a little sleepy so I can get a bit of rest. Of course I forgot to take it lastnight so I have been awake most of the night. Here it is 5:30 am and I am so fatigued but cannot sleep. My stomach is sore, a constant urge to go to the bathroom and headache is keeping me from a restful sleep

Anyway, I am off to a specialist today(not the fibro clinic), A muscle rehab specialist that I have seen once before and she suggested I try physiotherapy but it has not helped. I also tried chiro but to no avail. So I will go back to her today and see if she has any other ideas for me.

Let's pray for some relief.

Take care
 

Trfielder

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Ontario
Good luck today! I hope you find some relief.. This cold weather doesn't help.. What about Benadryl for sleep? Don't know if you can take it with your seizure meds but it might help you sleep ..I don't know what adivan is .lol. Hot bath before bed? Even warm milk ..
I know it's hard but go into your appt thinking it WILL help.. Sometimes just a little thought turns into a positive reaction..
Keep us posted on how it goes..your experience could help someone else..
Take care and drive carefull roads are still slippy
 

Shelly

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CA
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Hi Back again and what an awful week I have had. I went to a specialist near my place that I thought might be able to help me and it has been a nightmare. Wednesday night I had a grand mal seizure and my husband had to call 911 cause he could not wake me after 20 minutes. I woke up to oxygen on and paramedics in my bedroom. I do not remember anything about my seizure only what my husband told me happened. So I went to the ER and they did a few tests and basically said it was a seizure and go home. I have had seizures before but my husband said not as bad as that.
This happened 5 days ago and I am still feeling crappy. I was at the ER again last night as I had bad migraine with nausea and dizziness. Has anyone else ever experienced this kind of thing. Today my GERD is very bad and no matter what I do I cannot get rid of the nausea and dizzy feeling. Is this common for people with Fibromyalgia, as I have not been officially diagnosed with Fibro. I am wondering if this is related or something else is going on. They did a CT scan at the ER lastnight and that all checked out fine as have all of the other tests that I have had done these past 3 years.
I have lots of burning in my chest and throat as well as light headedness and even my eyes are sore and the headache is above my eyes and at my temples. Lots of burning in my private area and into my legs and feet. Also, internal tremors where it feels like my whole body is shaking inside.

Please any advise I can get regarding this would be great. I am still waiting to get into the Fibro. clinic near my place in the meantime I just suffer.

Thanks
 

Trfielder

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I know nothing about seizures so I can't help on that one..but have you had an MRI? I don't know if that will help
And I'm so sorry about this whole week for you.
My throat hurts most days and I am light headed and dizzy spells migraines but I think that is all typical stuff of fibro. But with you having seizures too I think maybe you should go see your GP.. He/she needs to know what is going on. It might be nothing but its not with the risk.
Hoping you feel better.
 

1sweed

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DX FIBRO
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01/1995
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Shelly,
Have you been on the same meds for a long time and at the same dosage? Reason I am asking is because of the burning sensations you are having in your body, plus the headache and eye pain. Not saying you have this but I went through the condition of Steven-Johnson Syndrome, which is a very bad reaction to medication. If your on high doses of anti-seizure medication, and your body can not handle the medication it is possible to have an allergic reaction that results in chemical burns. Do a web search and see if the symptoms match yours.

The burns happen from the inside out. I had burns around my eyes and in my nose, on my neck and chest, and throat and lower part areas. It burned all my muscus membranes. I had dizzyness and bad headaches, and balance problems. It took me over a year to recover. I lost my eye lashes and had burning around my lips. It was a bad time. I was lucky not to lose my eyesight.

Do a web search on Steven-Johnson Syndrome, and ask your doctor his opinion. Another reason can be too high of doses of medication which can cause balance problems and dizzyness, headaches and nausea, etc... Let us know how your doing and if you get any answers. Being sick is no fun. :)
 

sassy13

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Nov 18, 2013
Messages
51
Diagnosis
06/2011
Country
USA
State
Tennessee
Hi Shelly. Thank you for sharing your symptoms. I too had severe dizziness, nausea and vomiting. I used to hold onto the walls and furniture whenever I walked for fear of falling. My legs were weak and I stumbled frequently. My oldest sister has MS. I was given an MRI to first rule out MS. I'm happy to say it was negative.

It has been about 3 years since the onset of major symptoms although Im sure it started years before.
I too had severe menstrual periods and had a total abdominal hysterectomy. Thank goodness that problem is gone!
I have IBS. Sometimes I double over in abdominal pain. It is like I feel the movement of waste moving through every inch of my intestines.
I notice you mentioned tinnitis, ringing in the ears. I at one time had pulsitile tinnitis. I could hear as well as feel a drum beat in my ears. I went to my rheumatologist and asked why it felt like Van Halen is playing the drum intro to the song Hot for Teacher on my ear drums.
And the pain. Oh boy! When my condition flares, there are times my husband has to sit me up in the bed because I am unable to do it on my own. To complicate matters further, I have psoriatic arthritis too.
And what can I say about fatigue? It is to me by far the worst symptom I have. My fatigue is debilitating. For some reason today, I am up before 10. It does not matter how much sleep I get, I never feel rested. Sometimes when I am out at the store, I look at others and wonder if they could be feeling as fatigued as I do. My Dr put me on Ritalin for the fatigue and it is helping the battle. Fatigue is keeping me from working. In fact it keeps me from doing a lot of things. When it comes to dealing with fatigue, I have learned to live by what is called The Spoon Theory. Basically every activity we perform requires a spoon. A spoon for showering etc. At one time I had an unlimited supply of spoons. Now, when I wake, I have learned to judge how many spoons I have for that day and I spend them accordingly. When I have evening activities with my children, I save my spoons for the day by taking it easy and then spend them on a football game. I hate living this way, but it is the only way I have found to deal with the fatigue. Sometimes though you can't help but use up too many spoons, and oh how dearly you pay. My boys play football. If we have an away game on Friday nights I am certain to spend all of Saturday and part of Sunday recovering. The spoon theory also makes it easier to explain how you feel to others, especially your children. My youngest son, 13, came home from a wrestling tournament last weekend. He came home and plopped on the couch and said
"Mom, I've used up all my spoons. I'm going to lie down". I knew then he gets it.
Waiting on a diagnosis is a painstaking process. It took over a year to get a proper diagnosis. Hearing you have a chronic illness to live with for the rest of your life is not easy, but just knowing what you are up against is a relief.
I had an underlying autoimmune disease already when my symptoms of Fibro flared. I have an autoimmune liver disease called PBC. It is extremely rare. It took 5 years to have it diagnosed. Most of the Drs in Chattanooga did not know what to do when I began having other symptoms. I was sent to Mayo Clinic to the leading expert on PBC to rule out complications from the disease. He was the one who suggested I see a rheumatologist because he felt I had an autoimmune arthritis as well as Fibromyalgia.
I will never forget the look on my Drs face when she said you have psoriatic arthritis and fibromyalgia. She looked at me and said, it is a real disease. I do not wish this diagnosis on anyone., but for all the drs out there who are nonbelievers and it is all in our heads, please by all means be my guest and you deal with it. Only then will you see it is very real!
Only one more thing then I will stop rambling.
The shaking inside! Isn't it awful? I was first diagnosed with Lupus and placed on Plaquinil. I went through a 4 week period of constantly shaking. Sometimes it was so bad I had all over body shakes. I went to the ER several times. When they called my Dr, by the way I had to fire this guy when I was extremely sick because he treated me like I was crazy, he told them I was having panic attacks. They would give me something in my IV, At ivan, the shakes stopped and they sent me on my way. After the 4th ER trip, by the grace of God, I came across a dr who actually new what my real problem was. I was allergic to the plaquinil.I couldn't believe it! I was having an allergic reaction to a medication. I could have died!
Don't let non believing Drs slow you down or make you feel crazy. What you are going through is bad enough.
 
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