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NeraCaligula

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May 6, 2015
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Diagnosis
05/2015
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US
State
OH
Hi,

I have been having medical issues for at least eight years, and have been brushed off and offered antidepressants for most of them.

Fall of 2013, I got a lot worse. Extreme fatigue, moderate pain to severe at times, insomnia, waking up like I took a beating all night long, cannot find the right word, dizziness, stiffness, joint aches, muscle spasms in my neck/back which (I think) plays a part in my migraine headaches, my leg sometimes feels like it is disappearing. I get dizzy in direct sunlight and in stores after about 20-30 minutes. Also, with sunlight through trees. The light issues have at times caused me to feel like I am blacking out--everything gets dark in my outer field of vision and works its way in to blackness.

Promised my husband and MIL that I would make an appointment with a new PCP. This doctor did not brush me off and offer me antidepressants right off the bat--I liked that!

Blood tests apart from CRP were normal.

So new PCP gave me a steroid injection and told me it was definitely an autoimmune process, which one he didn't know. We needed to wait to see how it would present. Went on to say fibromyalgia was not a real diagnosis, but a placeholder until the real diagnosis was made (lupus, MS, scleroderma, etc.). At the time, I didn't give this a second thought. I was just so glad to not have been brushed off again!

I kept trying different things and just living and waiting for my AI process to present itself so I could get treatment. During this time Raynaud's started and also a lacy pattern on my arms, back, and thighs.

March 2015, my hair was falling out in clumps when I ran my fingers through it; extreme fatigue, joint pain, and muscle spasms all back! So went back to the doctor in late April. Honestly, I thought it was lupus and he apparently did too. He again told me about fibromyalgia not being a real disease. Gave me Medrol taper, steroid shot, and Neurontin at night. Drew blood and guess what? All negative as far as the SLE tests!

Just had an appointment today because I am sick with pneumonia. Anyway, he again tells me about fibro not being a real diagnosis. Gives me another steroid shot and antibiotics. I ask how much ibuprofen I can take for my severe joint pains, which thankfully are only once or twice a month or maybe every other month if I am lucky, and he said as much as I want! But I am afraid of ulcers and it doesn’t really help.

Since he keeps bringing up fibromyalgia and it not being a real diagnosis, to me it kind of sounds like he is saying he thinks I have fibromyalgia even though to him it is not a “real diagnosis”. Does that make sense? I am at a loss about what to do anymore. I asked for a referral to a rheumatologist who treats fibro to see if she even thinks that I may have it, and if so treat me for it since I doubt my PCP will, but haven’t gotten one yet. If I do get one and I do have the “not real” fibro, should I find a new PCP? I don’t like going to doctors in general, and the fewer I have to go to the better lol.

Any advice is greatly appreciated! I am tired of feeling crazy.
 
Sure sounds like to me, thyroid is crying for HELP and SUPPORT. Are you on any thyroid support? I've been talking and posting about thyroid and FM and lots of issues....There are some 66+ symptoms of low sluggish thyroid. I went thru 10 yrs of misery trying to get help and slapped with anti depressants all those years. It was THYROID.....

I don't know if you talked about thyroid with any of your docs, but IF NOT, it's high time...and if you are on thyroid support, it needs to be changed or whatever takes to get you feeling better. Adrenals need support too.

Integrative MD's are the best and I've been thru the others TOO LONG.....

PS: I know there are medical people out there who don't believe FM is real, I believe it's a lot of things gone wrong from thyroid, adrenals, hormones and deficiencies.

I'm not sure what I believe as I know so much needs to be addressed. Our foods are more toxic than ever for starters and public drinking water stinks...unless one lives on well water. I've studied it all.
 
Hello and welcome to the forum.
It is frustrating when something is wrong but you don't know what it is. I think your doctor regardless of the comments about fibro, has the right approach. I wish more doctors would admit they don't know what the problem is but still want to help find the answer. As your doctor stated it is true that a lot of diseases start with the same symptoms. In fact my doctor in Fl., thought I had MS, because of the way my problems would come and then magically disappear after a month or two. The same is for Lupus and other such diseases because all the symptoms are the same for a long time before the blood work shows where or what the problem is. Even CT scans or MRI's can be normal in the early stages. So don't give up hope of a diagnosis yet. and I think seeing a rheumatologist would be a wonderful idea, as this is the type of doctor that diagnoses autoimmune disorders.

On this forum we do not diagnosis disorders, as we do not have all the facts. But however, we do encourage you to do what you can to help manage your own condition by becoming better informed by reading and sharing with other members. This way you will learn how to self care and understand about medications and treatments, and things you can do at home to relax and improve your life.

So please jump right in and start posting answers to other members and asking questions and we will do our best to help you. This forum has a wonderful support system through it's members plus a place to vent when all is going wrong.

I am glad you found us and hope you will visit often. :)
 
Granted I get excited about thyroid dsyfunction as I was a victim trying to get help for over 10 yrs...here is what is said from a thyroid group I've followed for a long time:



Are you saying that ALL cases of Fibromyalgia are related to hypothyroid?

No. There can be other causes of the pain.

What we are saying is that a ‘large body’ just may be related to an undiagnosed or undertreated hypothyroid state. Many cases of thyroid disease go undiagnosed because doctors rely on the TSH lab test. And unfortunately, the TSH can be normal for years before it rises high enough to reveal one’s hypothyroid, so you could have been hypo all those years. For some, the TSH NEVER rises and one is still hypothyroid.

If you have been diagnosed with hypothyroid, being on T4-only like Synthroid has caused some patients to have a diagnosis of Fibromyalgia. And when they moved over to Natural Desiccated Thyroid, the pain disappeared.

Finally, have an undiagnosed or poorly treated cortisol problem and/or low iron can create the fibromyalgia state, since either of the latter mean you will continue to have hypothyroidism.)))


I personally found I had a low cortisol for a long time and still feel challenged with low cortisol, and on the iron, all my irons are good, except Ferritin, which I've been working to bring up for years. Many women have low Ferritin.

So this FM diagnosed and issues are very complicated and getting pieces of it's puzzle take so much time. And many do not get the help they need.

I am not a doctor, only talking about what I've seen from me and others for years.


One MD I hear on radio weekends, believes bio identical hormones are a big part of the FM issue. I haven't gone that route but thru my first integrative MD visit many yrs ago, found DHEA levels to be depleting and was put on DHEA which I take daily for many years. DHEA levels begin to fall at ages 20-30.


Another informative group talks on the hypothyroid mom blog and Fibro is talked a lot over there too and the thyroid.
 
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Sorry that it has taken me so long to respond. The pneumonia wiped me out, but I'm much better now :) Then, it was the end of school stuff with my son...Yay for summer break!

Thank you 1sweed. I guess that I do agree with the doctor too, but it is just frustrating and makes me doubt everything. What if it is all in my head kind of thing you know? I actually had a checkup last week and things have been much better. Neurontin makes me not wake up NOT feeling like I was beaten all night long, and I was prescribed 10 pain pills to have on hand if/when the pain gets too bad. To be honest, I think I am afraid to take them for fear that they will stop working, but I would rather take half of one to be able to move without crying.

I didn't know that about MRIs being normal in early stages of MS! My doctor did say that just because my labs were within normal ranges that didn't mean I didn't have it--just that it wasn't showing up yet. He also said that that was good because if it was lupus then it wouldn't be doing as much damage at present. Autoimmune is just horrible!
 
NeraCaligula,

As a man with lupus i will tell you that the blood tests didnt show lupus. the rash you have, it it burns and burns under the sun and the floresent lights it make be skin lupus. have the doctor do a skin biopsy. it's the only way to tell.

he gave you Neurontin witch is one of the meds we get with fibro. muscles relaxers and anti-depressants also.
if he gives you cymbalta or lyrica he is trying to treat the fibro or nerve damage like small fiber neouropathy.
eventually he will send you to a RA or neurologist. that's where they will find whats wrong.
before you go to the doctor you should ask, do you believe in fibromyalgia?
 
hi just a quick messege .i live in the uk i dont know what it is with all thease so called drs saying there is no such thing or its in your head .rubbish fibromyalgia has been around for a long time its not new people dont reconize it but its real name is actualy fibrositis x
 
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