What really helps YOU with Fibromyalgia?

[akajbart]

I'm new here and to the fibromyalgia diagnosis. However, I'm not new to the pain and other symptoms. After many years of complaining to my Dr., he finally scheduled me to see a Rheumatologist, but I can't get in for a month. I want to go into my appointment with some knowledge of different medications so I'll know the right questions to ask.

If you could please tell me what medication, diet, exercise, etc... Truly helps you to feel better. :lol:

Thanks,
Kristi

 

[1sweed]

Re: What really helps YOU?

akaibart,
First off welcome to the forum. I guess thje first thing I would tell you is when you see that rheumatologist, tell him or her, your worsest symptoms, the ones that make your life a challange. Save the other problems for later on visits. Why? Because some doctors want your whole history in 15 minutes. If you go in with a long list of symptoms the doctor may not take you seriously. Now, mind you, you might get lucky and have the most understanding doc in the world, but those docs are rare and far between. Try to be brave and don't be scared. Just tell the doctor in plain terms what has been troubling you and for how long.

They usually want to know in detail how bad the pain is, that old on the scale of 1-10, and how does it feel. Think about how you might explain about your symptoms so that you don't get mixed up with brain fog and lose your train of thought. It can happen, I was so mixed up I could not think straight. Sometimes I think these types of doctors used to be lawyers, by the way they question patients. lol

Above all do not tell the doctor what you think you might have. This type of talk will not go over well with these types of doctors. Be patient and let the doctor diagnosis you. This is for your own sake as you want to have good medical reports and if you self-diagnosis, the doctor may put things about you in his reports that can come back to haunt you, should you need to see other doctors.

I hope this makes sennse and helps you during your doctor visits. In the mean time be sure to read posts on the different topic and feel free to ask more questions and answer a few as well. See you around the forum.

 

[jcairns82]

Re: What really helps YOU?

So glad to hear that you were able to get an appointment with the rheumatologist and I hope that you're able to get an answer that suits you.

I haven't used any medication directly diagnosed for the pain, but that hasn't stopped me from taking the occasional tylenol 3 to alleviate the pain. Unfortunately, basic extra strength pain medicine has long done nothing for any sort of pain, as I seem to be immuned to their effects. Now I just do my best to do a little bit of exercise to alleviate the pain and that tends to help me on most days.

 

[Trfielder]

Re: What really helps YOU?

Yes go with KISS. Keep it simple stupid That seems to be the only way to deal with drs..and have it in list form.
I'm finding if I walk every day it helps(1km) and heat is my god send. As for meds do research first on your own see what the dr suggests but the final decision on meds is yours. Don't make the first suggestion on meds but ask questions about them..if the dr doesn't mention them to you then by all means ask but a lot of them think we just want pain killers. I know I don't . But you have the right to be comfortable in your own body.

 

[Trellum]

Re: What really helps YOU?

Well, I used to smoke marijuana to treat my fibro, but I had to stop because my asthma starts acting up during this season of the year. I must say this didn't only help me with the pain, but also with my lack of appetite and sleeping issues. The defects vary from person to person tho. So what works for me might not work for you. So you must do your own research and experiment a lot.

 

[MizzDeeDee]

Re: What really helps YOU?

Sleep. I think sleep helps me out tremendously. Such a simple thing, but it makes a huge difference. It doesn't make the pain go away completely, but I feel more pain when I haven't had enough sleep as I should.

Heat also helps, and so did deep tissue massage. Deep tissue massage was one of the best things that worked for me. If I can get that again, I'd jump at it.

 

[lizzie cabal]

Re: What really helps YOU?

I have a chronic upper back pain that started in 2010. I have consulted several doctors already and one doctor in New Zealand prescribed Amitryptiline HCl. It does help a lot..the pain seemed a lot less while I am on that medication. I suggest try consulting your doctor and see if that medication suits you.

 

[love2travel]

Re: What really helps YOU?

I have tried 25+ kinds of meds (Oxycontin, morphine, Flexeril, NSAIDs, Lyrica, Cymbalta, Amitriptyline, Baclofen) and have had no relief. My pain is so bad I lie on a mattress on the floor to watch tv, often stand to eat, lie down in vehicles, etc. Had tons of physical therapy, acupuncture, laser, chiro and massage (about $50 K worth) and the only thing that provides temporary relief is massage. My being overweight does not help so have recently gone low carb, gluten free (I have celiac disease) to get healthier and lose weight.

My greatest help is God followed by my supportive husband. My attitude used to be woe is me but thankfully that has changed. I used to have fear avoidance, too. Focusing on something else helps ( i.e. love volunteering at our soup kitchen).

Admittedly, it would be so great if there was a drug that actually helped. Until then, I do what I can from hiring a housekeeper to doing things early in the day to following my passions such as cooking and reading. Distractions are great!

 

[Trellum]

Re: What really helps YOU?

Ah, back when I replied to this thread for the first time I still smoked weed to treat my pain, I no longer do it because my asthma has been acting up. Now I'm trying to take a completely natural approach... I take several natural supplements, I rest and sleep. Also I use a topic oil for the pain, I take pain meds when needed only. I'm trying to go natural since I'm already taking meds for other things! Hard decisions ahead

 

[LivetoErr]

My Rheumatologist wrote in her letter to my Primary Care Doctor and stated that she started me on a low dose of a sleeping pill to help with my Fibromyalgia. Apparently sleep is an important thing for us sufferers. However, who gets sleep? I only sleep when I take Benadryl and Trazadone. The sleep aid she prescribed stopped working and, because it's addictive, I stopped taking it. There was no way I was going to continue to increase my dosage and become dependent on sleeping pills.

I believe my Fibro is stable because I was prescribed Citalopram (Celexa) and Trazodone to combat Prednisone side effects. I think, because I take the Citalopram in the morning and the Trazodone (Desyrel) at night I have 24 hour coverage. However, I never feel rested. If I take 2 Benadryl I sleep like a baby but am completely useless in the morning. Almost all sleep aids make me so groggy in the morning I can't get out of bed. If I really need sleep, I'll make sure I have no definitive plans the next day and knock myself out. It's rare though, because I hate feeling like I'm dopey the next day.

 

[MJWilliams]

Re: What really helps YOU?

What exactly are you doing and what have you found that works? There are so many "natural" supplements out there, diets etc....How do we keep from being scammed?
I don't have good health insurance or a job that pays well, so I can't afford to "try" a lot of stuff. Thank you.

 

[wahmbrenda]

I haven't yet found anything that works for me, sad and scary to say. Heat will sometimes work on my lower back. I'm also trying Gabapentin for the second time around as my new doctor thinks maybe I didn't take enough of it the first time. He also wanted me to try physical therapy but I've been there, done that, didn't work LOL

 

[flo54]

I told my new primary doctor about my spasms for years and I asked her to refer me to a rheumatoid doctor she stated let me try you on another application first , she prescribed meloxicam have you tried it ? I haven't been on it that long. I bet it wont work. I am kind of upset with the doctor I had this to long for her to think the meloxicam is like a miracle drug that's suppose to clear up all the spasms since 2006.

 

[Jenny Heart]

I'm glad when Fibromyalgia suffers are able to find medications that heal their pain. I do take Lamital which seems to help to some degree;however i also feel that herbs have played a big part in my pain control management. If you're interested in homeopathic options try visiting your local health food store, and start asking questions, and as always ask your doctor before taking herbs for pain, or mixing herbs with medications. There are times when herbs, and medications don't mix, and reaction do occur.

 

[Trellum]

Re: What really helps YOU?

What exactly are you doing and what have you found that works? There are so many "natural" supplements out there, diets etc....How do we keep from being scammed?
I don't have good health insurance or a job that pays well, so I can't afford to "try" a lot of stuff. Thank you.

What I do to avoid being scammed is always research the natural supplement I'm about to buy, I also research the company and make sure said company has been around for quite some years. Is never recommended to buy supplements that weren't made in the US, because if you do you are taking a huge risk; most countries don't regulate the manufacture of natural supplements.

So there are many risks involved in buying foreign supplements. The FDA might not be the most fair and useful, but at least makes sure the manufactures of natural products in the US comply with certain rules and standards.