New to fibro and Lyrica

Symptoms & Treatments
1

Hi. I am happy I found this site. ALthough I had a fibro diagnosis for years, it was only mild with some muscle pains, fog, and fatigue. Recently it has come full blown. I did not know what it was initially. I felt burning under the skin so bad I was sleeping on ice packs. We tried Cymbalta which did not help. Now I am on Lyrica and am well aware of the potential side effects. I know some people voice concern that it is a seizure drug and it messes with your brain chemistry. While true it is a drug that targets the brain, that is how it works for seizures; by correcting abnormal firing of nerve cells which causes seizures. It makes sense it would work for some of us with FM since the latest research suggests there is some component of abnormal nerve function. I worked in medicine for 9 years and with folks who had very bad seizure disorders. I know for sure that there is NO one med that works for all types of seizures and so it does not suprise me that the same is true for FM. Also Cymbalta and any antidepressent changes brain chemistry. It must be aweful to have such scary side effects and I do not blame anyone for stopping a med, although I would not do this cold turkey.

I have been on a small dose for about 3 weeks and the burning is better by 80%. I am very pleased. But I also have been more tired. Risk vs benefit. MY QUESTION is this: Does anybody else wake up with only upper back and neck stiffness? It is terrible but with a warn bath and stretching i do get some relief. Anyone have other "tricks" I might use?

Thank you

Maria

2

Hello Fibrokitty,

What wakes me up at night is leg pain. It has been my story since 17 years old. The only thing I find useful is elavil and advil pm. I just cannot get a decent nights rest without them. I try to go with out the advil at night but low and behold, 3 am, I am in pain. wish you luck

3

Hi,

We are our hearts and brains. You can cut most of the rest of us off or out but you end up with the heart and brain being the functioning organisms. That said, lyrica is the only drug that goes directly to the brain where Fibromyalgia is not firing. I have heard of many side effects too but the name of the game is to be aware of them and if it works for you, then that is great.

The problem you may be facing is your nociceptors. "A nociceptor is a sensory receptor that responds to potentially damaging stimuli by sending nerve signals to the spinal cord and brain. This process, called nociception, usually causes the perception of pain." One of the major genes of Fibromyalgia has to do with the hypnotic state of sleep and a lipid that malfunctions when sleep is deprived.

Our sensory receptors for most people with fibro though not all, are not happy with barometric pressure changes at all which ballon our veins and cause more oxygen to get into our brains quickly. The receptors do not like cold. This may have to do with irregular hormone function from the thyroid hormones. Not the gland, necessarily. Cold is not a friend of most. (exactly oposite of Lupus and MS) so when you sleep not only does your body cool down at night but your metabolism which should be continuing only 5, 7% lower is not functioning right... thus your cooling gets lower. Our bodies seem to react to that with a stiffness in the muscles that needs WARMING up.

I live with icy hot, its my best friend, some use Biofreeze. Heat up with a sock filled with raw rice and microwaved... don't cook it. it can lay in places that are cool inside and heat you up.. especially the neck. I found strangely that the fabric for super soft baby things. That cuddly fabric.. some socks are made of it. Like super cuddly yarn. Well, I wrap leg warmers around me made of it and even wrap socks on my ankles and WHISH the pain stops with some icy hot underneath. I imagine that flannel would work similarly, dont let your skin no its cold or cooler.

When I lived in the USA my upper back and neck were worse. I wore a soft neck collar for a few years. Now that I live n the tropics away from that cold reception and few barometric changes, I have almost no neck or back pain.

warm bath, yep, stretching while in there, yep, biofreeze or icy hot following, good idea, rice pack in more painful times, good.... Try not to let the air outside touch your body. cover with something even baby soft flannel... since your body at night is going to cool more than your nociceptors would like.

Just suggestions, but they sure work for me.

Hugs and good luck, Spring is on the way,

Hopabout/ Cheryl

4

thanks cheryl

luckily it is working wonderful for me. And I was in medicine for many years. One thing I learned is that for the most part, we just do not know. One year we say the drug works this way, but the next year it is "oh we were wrong" I know about pain sensors, grey and white matter, pyramidal tracts, nerve pain versus muscle pain......but in the end i think we are still too early in the fibro history to say with conviction that we have found the area of the brain to target. My pains were nerve pains without a doubt. Three weeks after starting Lyrica they were gone. And these pains were too diffuse to suspect local nerve irritation. So the Lyrica did something in the CNS. I know the side effects can be bad, but that pain was like nothing I ever had.

The weather is a tricky thing as also have RA which is sooo bad in the hot and humid weather. I have found I feel best when the weather is cool and dry. But we are all so different.

and sleep is a huge part for me, always was...even when I just had the RA.

Ah the roads we must travel.....

Hugs back

Maria

5

I struggle with problems in my lower back and only in the last few months I have had problems with a stiff neck. I use heating pads to help relax the muscles so I am not so stiff I am on was on cymbalta and recenly went off it was not helping I was thinking of tring lyrica but afriad of the side effects I am already on an antiseizier med called topamax for migraine prevention and the side effects from that at first were bad but slowly went away my dr says I can take lyrica I have heard that it has helped many fm patients in the first few weeks I hope it continues to help you and I hope heating pads or even those things u can heat in the mircowave can help with your back and neck