Fibromyalgia and Weather Changes

[Misfit Toy]

Here on the East Coast, the weather has been doing a number on me. From hot and humid to 38 degrees the other night and freezing, to rain and now it's hot again and I am in shorts. My pain is through the roof. My knuckles hurt and everything. I don't even think I could have someone touch me right now. My allergies are also not good and I have been on meds for that.

I am blaming myself for this for some reason. I was doing better and now I have taken a crash. My sleep has been trashed; so much so that I don't want to go to bed at night. So, I stay up. I can't get comfortable. I feel like death.

Before anyone suggests more narcotics, I have a horrible time with them. Horrible. If I take Tramadol, and I can only take a 1/4 of the pill or I will start itching..I can't sleep too well. And, for some crazy reason, I feel the effects of taking it HOURS later. Hours...not right away. Beyond weird. I don't do well on opiates. Not at all. I itch from all of them and I have some kind of allergy to most of them. Magnesium does nothing. Baths help for a small period of time. Massages make this way worse.

I am really sad and crying actually because the pain is ruining me. I sometimes wonder...do I really have CFS? I mean, most of my life has been spent in pain. I had Endometriosis where that messed up my life, then that was followed up with IC and horrible pain and it's now moved into fibromyalgia. I have pain syndromes with severe immune disruptance and fatigue, but who wouldn't if they can't sleep and feel like a weight of pain is on them?

I am not sure if going to a rheumatologist would help because they recommend meds like Lyrica which makes me drool. Yup, I can't talk and I drool. Neurontin makes me super depressed.

I just don't know what to do if anything.

 

[*GG*]

The weather seemed to affect me this winter, seemed like with every big storm, I would worse than usual.

I would stay away from narcotics, especially when they are not helpful. My pain was worse in the past and I was seeing a Neurologist, and he prescribed me Fentanyl, I just got worse and my world came crashing down!

There are so many more meds than Lyrica and Neurontin, do you do well with prescriptions? Do you take any supplements that can help with inflammation? Fish oil? Curcumin perhaps?

Have you ever tried LDN? I see you say you have immune issues, and since you do not take Narcotics, you could take LDN, it does not work overnight, but something to consider?

I think many things can lead to CFS, so just because you had other issues, does not mean you do not have CFS, unless you have never been diagnosed?

GG

PS Don't blame yourself, and work on getting sleep, you are right, if you don't get good rest, it's hard for your body to be "normal" in ANY other regard! I wish I had known this years before I did, this is definetly a place that the medical system has let us down!!

 

[Misfit Toy]

ggingues, thank you for responding. Seriously! I don't know what else to take. Flexoril made me nuts. Also, Soma can help. I am okay with anti-inflammatories, but I feel that I could be messing up my stomach which I have read so that scares me.

Fentanyl is one of the drugs I can take, but I can't sleep on it. My mind just wanders for some reason. Sometimes I itch on that one, too. I can do better with prescriptions that supplements. but...pain meds are a different story.

I see everyone on here talking about curcumin but I haven't tried it. I am supposed to do the methylfolate and I am not sure if I can mix all of this stuff. I am on Vitmain D3, which is doing nothing. It's a fish oil.

LDN, I took back in 2008...could not sleep on it. Felt so unstable from no sleep.

I am going to try and go to bed tonight. Right now. This week has been so bad, my place is a mess, I have work to do, but I need to go to bed. I am exhausted. I also have a migraine.

 

[*GG*]

Oh yeah, LDN can disrupt sleep at first, so not a good idea at this point.

Yes, get some sleep, I don't get the end of this paragraph:

I see everyone on here talking about curcumin but I haven't tried it. I am supposed to do the methylfolate and I am not sure if I can mix all of this stuff. I am on Vitmain D3, which is doing nothing. It's a fish oil.

Vitamin D is a Fish oil? not that I am aware of.

I forgot to mention in my first post about finding a good internal medicine Dr or phsyiatrist (physical medicine Dr) perhaps?

GG

 

[Misfit Toy]

I think it's a fish oil. It tastes like fish!

A lot of cod oil is where Vitamin D comes from.

Physiatrist...have not heard that word in forever. Can't remember what they do.

Still awake, horrible insomnia and pain. Wondering if allergies are a factor in this tangled web.

 

[Valentijn]

I think it's a fish oil. It tastes like fish!

A lot of cod oil is where Vitamin D comes from.

Fish oil has vitamin D in it, but vitamin D doesn't necessarily come from fish oil. The important thing in fish oil for inflammation is omega 3 fatty acids (EPA and DHA). I do pretty good on three grams per day, but more than that doesn't seem to help me any better.

Cod liver oil has too much vitamin A in it to be used in these amounts (too much vitamin A can be toxic), so regular fish oil is a better option.

Another common factor between your inflammation and food allergies might be histamine. Have you tried any anti-histamines?

 

[Gypsy]

Hey The Spitfire

Forgive such a simplistic response, but have you ever tried epsom salt baths? Magnesium (oral) does nothing for me either, except mess up my stomach, but I recently started taking luke-warm epsom salt baths which are supposed to not only raise magnesium levels but relaxe muscles while in the bath. They really do seem to help atleast temporarily. The instructions usually say to add 2 cups to a luke warm bath, but I add 3. And slather/rub the melted salts all over. It is the best $3 I ever spent!

If you have a bathtub (?) that is.

This weather is crazy, one day it is 40 then it is almost 90 and raining. As I write, there is such a dense fog you can barely see a thing outside.

I really hope you can find some relief soon, as in right now!

 

[Misfit Toy]

I love Epsom salt baths. Problem is, it's only a temporary fix. I usually take 2 a day! I love hot baths.
Valentijn, I take Zyrtec everyday.

Any recommendations on a fish oil brand?

 

[Valentijn]

Any recommendations on a fish oil brand?

Jarrow's EPA-DHA Balance works pretty well for me, and the price is decent.

 

[Ema]

Any recommendations on a fish oil brand?

I like Coromega. I mix it into Greek yogurt and it tastes great.

 

[Gypsy]

The Spitfire

Geeze, it is just awful when your choices are so limited because of your adverse reactions to meds. It sucks! I know, because I have adverse reactions to most meds.

Have you ever tried a med called Zanaflex? I have no experience with it, but some take it. Also, have you tried a low dose of diazepam? Something like 2mg, to avoid drowsiness. It works for some types of muscle pain. Maybe a low but steady and consistant dose throughout the day would help. Apparently there is also an extended release diazepam.

LDN was a nightmare for me also. I tried it for months. Felt drugged and like you, could not sleep no matter how low the dose was. Also majorly screwed up my periods, which are already miserable enough.

I love my epsom salt baths also. I am looking into making magnesium oil from magnesium flakes. I wonder if the oil would work longer, like permanantly sitting in the bath, hell maybe thats the solution, live in the tub lol

 

[Shell]

The weather is a truly yuk thing that effects FMS. I can tell when a storm's coming long before it gets here. My dear husband calls it my "cows lying down in a field" symptom from the old wisdom that cows sense a storm coming and go and lie down in groups. My teeth buzz if there's going to be lightening. Seriously. I am so weird!

For pain I take amitriptylene. To begin with it left me feeling crap but I kept at it and now 50mg nocte helps sleep and pain most of the time.

I am sorry you react to so many meds. That has got to be so frustrating.

 

[Dmitri]

I love Epsom salt baths. Problem is, it's only a temporary fix. I usually take 2 a day! I love hot baths.
Valentijn, I take Zyrtec everyday.

Any recommendations on a fish oil brand?

Sonne's is the only satisfactory one I was able to find nowadays. It is the least processed and doesn't have toxic additives. Years ago, Carlson was the brand I used to purchase, but they began extracting the oil differently and adding synthetic vitamins (A & D) to replace the ones lost in the new process.

 

[Moxie]

This may sound overly simplistic, but have you tried something along the lines of Icy Hot? The baths do me wonders. I soak for up to an hour at a time, letting the cool water drain out a bit periodically to refresh with hot water. But as you say, the pain creeps back in. I'm hypersensitive to NSAIDs (GI bleeding and severe cramping) and don't like to take anything stronger. So on really bad days, when I get out of the bath I slather myself in Icy Hot. It seems to work best when my pores are still open and my skin is warm. I wonder if you'd tolerate that or another liniment?

Also, applying heat outside of the tub is helpful to me. I have this delicious heat belt-thingy that you warm in the microwave. It's designed to wrap around your back, but I move it around. I wish I had 10 of them. Or one giant one.

I'm sorry you're going through such a hard time with your pain right now. I hope the consistency of the warmth over the next few months brings you some relief.

 

[Misfit Toy]

Gypsy, I have never heard of Zanaflex. I will look into it. Yes, I love baths. I think they settle pain, but I also feel like they just help CFS in general. Like, they clean you off, relax muscles and can possibly help you sweat and detox.

Amitriptyline was the devil for me. Made me super racy and speedy. No sleep on it. Actually, in the beginning..yes. And then, no.

Never heard of coromega. As far as diazepam, I am weird in this one too. It drugs me like no other. I can't sleep on it. Again, I have to cut it into a quarter. It's crazy!

Icy Hot...I would try anything. Almost. But yes, I would try it.

I seriously hope the weather turns around. You know what I wish for more than anything? For FMS to go away. Just leave. I am on a fentanyl patch right now which is helping, but I feel drugged. That bums me out so much. For years, I didn't have this shitty FMS. I want to go back to that.

 

[Gypsy]

I hear you. I just want this bleeping ---> insert word of your choice<---- to end, to go away. I want a bright light at the end of this tunnel. I want to be able to sleep, like a normal person. I want to not be in hell with my hormones every month. I want my gut to work properly. I've read some of your posts, I think we have some similar issues. I want meds to work me for the way they do for *most* other people.
I took amitryptyline once. NO sleep. Wired. Racing heart. WTF. Really, people take this to sleep. What is wrong with my brain? Even Remeron, really did not work.

Err, diazepam is tricky. Actually quite a few have reported it making them "wired". I would look into zanaflex. I asked about it, but it seems like doctor did not think it was the right option for me.

I think sleep+hormones are SUCH big players in FM and CFS for women, and there is no magic bullet. Maybe a sex change and a medically induced coma for a month.

Sorry this probably wasnt a very helpful post, just venting!

 

[Misfit Toy]

Gypsy...thank you for that venting post. I needed it. It made me feel bad for you and yet feel good that I am not alone. I am on Fentanyl right now. It's helping my pain but man, I am exhausted. I am in a robe right now about to go to bed. I want to sleep. I want to be free of pain. I want the hormones to stop acting nutso.

I want people who are well to understand me. I want more family. I want to not have to work anymore. I had a 12 hour day yesterday in the rain...outdoors. A jewelry event outside. It was successful, but now I am sick. I want a partner.

I want to take meds, like you said and be okay after I take them. I want the energy to fill out paperwork for assistance with meds.

I lay here and feel like...what you said. What is wrong with my brain, my liver, my everything?How is it, that I have become sicker over the years and developed other ailments and yet I look good. I look great, so people say.

Hormones, for me, have been the BIGGEST problem since CFS. They affect everything for me. I have had some of my better days and the worst days of my life due to hormones, my periods, etc. I sleep either great when I get my period or I don't sleep. WTF?

The only consistency is no consistency. Things that work, stop working. Things that used to help...no longer help. Magnesium spray did wonders once, now it does ZIP.

It's a crap shoot! So, Gypsy, thank you for your vent, because now I am majorly venting. I am so tired of this messed up life.

I have friends that have 3 kids, don't sleep, make dinner, work, etc and I can barely go to the grocery store somedays. How does that work? It's like speaking to an alien.

And tomorrow, I could be much better...which again, thank you, but WHY? How can I feel like death one day and the very next day have a REALLY good day?

WTF? Who in their right mind can make sense of that?

 

[Misfit Toy]

Don't delete it unless you must. Others will see it and relate. Will PM you!

 

[Misfit Toy]

Fibromyalgia finally has a blood test to confirm! This is great news and will mean that FMS will be taken a little bit more seriously now and...possibly better treatments.

 

[Xandoff]

I think it's a fish oil. It tastes like fish!

A lot of cod oil is where Vitamin D comes from.

Physiatrist...have not heard that word in forever. Can't remember what they do.

Still awake, horrible insomnia and pain. Wondering if allergies are a factor in this tangled web.

I was diagnosed with a vitamin D3 defiency in 2010 when I was already taking 3,000 I.U.'s of Vit D3. I too live in Northern New England (not much sun) and I take 10,000 I.U.'s of D3. It does help! It has to be D3 not vitamin D (or D1)and it does help with pain.

The bad weather really makes my life hell and it's just about managing symptoms. Poor sleep = pain, bad weather =pain. Pain more pain.

Keep the faith!