Chronic aches & pains

[emmalou1610]

Hey guys hope everyone's doing well! Just wanted to ask you guys about being in constant pain. I've got joint pain all the time. Lately one of my knees has been particularly bad, it's become permanently painful. I know this can be a cf thing, but since it's become consistent, every day, at least by evening time, my body aches all over as though I have a flu. And I don't have a flu or cold my body just aches. I'm wondering if any of you experience this sort of chronic pain aside from joint inflammations, and do you treat it?

On a sidenote my CF team have advised me not to take anti inflammatories as my stomach is burning me at the mo from so many other tabs.

Gosh the excitement of it all!

Anyways, just wanted to hear your guys stories!

Thanks, Em

 

[chris27rocker]

I'm sorry to hear about your pain. I'm in a similar situation, although I have HPOA, which at least explains the joint pain.

I've had acute kidney failure in the past, so I'm careful about NSAIDS, but I do take them. I can't speak to the stomach issues, sorry.

I've had quite a bit of relief by adding Glucosamine to my daily routine, as well as stretching and the occasional massage from a family member. Most of all, HEAT. Hot water bottle, blanket, heating pad, whatever - if it hurts, warm it up. I have those flu-like body aches all the time (I'm weaning off of Prednisone) and I just get something hot and move it around. Head, shoulders, back, stomach, knees. No side effects, and works wonders.

I don't know if you have fever as well, but managing that helped with my pain, too. Laying down for a short rest takes the edge off.

Hope some of this helps!
~Chris

 

[kgfrompa]

I am so sorry you are having the aches and pain. I have them all over just as you decribe but mine come and go I also love heating pads and electric blankets as i have many fevers and chills all the time.I have to take low doses of prescribe drugs I have tried not to but my quality of life was so much more limented if i did not.

 

[lilmac1177]

i've been dealing w/ more severe and frequent joint pain since August, was referred to (by CF team) and now seeing a Rheumatologist to find out what's going on ... it might be that it's just CF-related, but they want to rule out everything else first. so far, i've been negative for RA, Lyme, etc. my gut tells me that it is, in fact, associated w/ CF though my CF docs tell me a very small percentage of CF patients actually suffer from this - which surprised me because i've read about what seems like many who do. i just saw an Infectious Disease physician a couple weeks ago due to two Lyme tests that came back positive then partial positive, but ID said she didn't believe it's Lyme, sooooo back to Rheumatologist i'll go! i've been on a small maintenance dose of Prednisone to alleviate the pain as it seems to be what works right now, but the Rheumatologist most certainly wants to explore other options than steroids since it's not a good long-term solution.

chris27rocker: what is HPOA?

 

[chris27rocker]

Marcie- HPOA stands for Hypertrophic Pulmonary Osteoarthropathy. It means that the growth factor released in my lungs to try to heal them from an exacerbation leaks out and causes extra bone to grow in my joints. (Ouch.) My CF docs hadn't seen it before, but I understand that it's pretty common with more severe disease. Six months of physical therapy got me walking after it flared the first time, and now I stay on top of it with exercise, heat and NSAIDS if necessary. An X-ray of the painful joint will show if you have it, so at least it's a simple test!

 

[leojoshrun]

Hey guys hope everyone's doing well! Just wanted to ask you guys about being in constant pain. I've got joint pain all the time. Lately one of my knees has been particularly bad, it's become permanently painful. I know this can be a cf thing, but since it's become consistent, every day, at least by evening time, my body aches all over as though I have a flu. And I don't have a flu or cold my body just aches. I'm wondering if any of you experience this sort of chronic pain aside from joint inflammations, and do you treat it?

On a sidenote my CF team have advised me not to take anti inflammatories as my stomach is burning me at the mo from so many other tabs.

Gosh the excitement of it all!

Anyways, just wanted to hear your guys stories!

Thanks, Em

I'm very sorry for the pain you are facing. Finding out problem in the beginning stage is wisdom. Its better to consult with Rheumatologist immediately.
First find out the problem then you can solve in any way you want.

Leo

 

[CysticKid]

I feel your pain, literally. The last 18 months or so I have had increasing joint pain and muscle soreness. It seems to come and go with my health. If I'm feeling good I don't notice it much but if I am feeling crappy then it's very problematic. I have become pretty dependent on 400mg Motrin to get me through the day, which comes with its own host of stomach issues. Actually, the reason I am writing this post right now is because my joints are bothering me too much to do the work out I got up early to do. What fun!

 

[dancer78]

Hi Everyone... EM, I'll tell you what makes a HUGE difference with me. This is something my doctor always rolls her eyes at, (altho she can't deny, at my age, I'm doing something right!) This simple thing works not just for my joints, but for my lungs too: drinking at least 1 to 2 pitchers of water a day. Not store-bought juice, not milk, not ice tea, sodas, non of that. (But I do love coffee)

Just plain ole water. I put a couple of cucumber slices and lemon in it, (like the spas do) tastes really refreshing! I try to make sure by 7 pm the pitcher is empty. Two pictures are better. No more pain, I'm telling you. And I have stairs in my house!

I'm 52, DD, and still have a full time career, animal rescue, husband... and go to advanced ballet 3 times a week. (talk about some muscle/joint pain.) Plus I juice. Carrot/apple or orange (and I add other stuff if I have the time/mood) Fresh juice (not odwalla, etc. unless in a pinch) repairs the lungs and the rest of your body. But the plain water in-take is HUGE with how I feel, and how much I cough. I still cannot believe nutritionists don't push this more.

Here's a website for you: http://watercure.com This book really opened my eyes, and it even mentions CF. Will you hear about this from the CF docs? Don't count on it. They are only trained for meds. Meds are good, but they are like a band-aid... they won't HEAL you. Just get the book and read it yourself. It makes perfect sense. Why do we have this sticky mucus? What goes wrong in the body that makes us produce it? Because we are all basically DEHYDRATED. Think about it. That's what the mutation does. It keeps water and salt from passing through our cells like it should. And that small thing creates huge havoc.

Talk about not seeing the forest for the trees...

And it will show up in every area of the body. Your joints need water. Your muscles need water. Your pancreas needs water. The LUNGS are (supposedly) 80% water... Talk about a light bulb going off. That's what I felt when I first read that and heard the term "dehydrated mucus in CF patients." Go figure!!!! And I didn't hear any of this in a CF clinic.

Now don't think that you won't absorb any of this water. (That's what I thought at first.) You will. Maybe not as much as a person w/o CF, but you will. Stay with it, and I'll bet money that you'll see a difference.

Going up and down my stairs, I can tell if I've gotten too busy and not finished at least one pitcher. And I won't last 20 minutes in ballet (can't breathe) if I didn't have enough water the day before. (Also calories plus carrot juice, but that's another story.)

There are other things I do too... more later or pm me if you want to know now. It's just one piece to a puzzle; a big piece.

Best to you EM... (and all of you reading this) you deserve it!

Diane, 52, DDf508. Same lungs and all organs. Lungs not 100% but they still work fine! Dancing for my life, and figuring it out with the grace of God.

 

[kyeev]

Hi Em,
I get joint pain quite a bit, CF related arthritis they tell me.
Its always infection related, so I normally end up on IV antibiotics and take 40mg prednisolone for a week.
The pred is really good for resolving it.

 

[lilmac1177]

thanks for the information, chris27rocker! i'll have to research more on that...

 

[emmalou1610]

Gosh thanks everyone for your replies! I am so sorry to hear a lot of you experience it too. Just one of the joys of CF huh?

I am being referred to rheumatologist. Hopefully I'll see him soon and he may be able to give me something for some relief.

But for the moment the heat suggestion really helps, hot baths, heat packs etc.

It's becoming a bit debilitating as it's every day. It puts me off getting stuff done because of the pain but like I said hopefully the rheumatologist gets to the bottom of it soon.

Dancer78: Thank you for your suggestion. I drink quite a lot of water a day, maybe if I increase it a bit more I may see results? Hopefully!

I am also going to start taking glucosamine tablets. My 81 year old nana swears by them for her arthritis, & if they work for her surely they'll work for a 22 year old CF'r with joint pain?

Thanks again you guys. I'll let you know if I find any method to alleviate the pain and I certainly will share!

Em

 

[LittleLab4CF]

Funny, I used to think joint/back and arthritic pain was just something I had. For a scientist, sometimes I wonder about my common sense. I have been on the edge of jumping out of my skin with body wide joint and bone pain since I was 20. At 20 I was hurt in a climbing accident resulting in a lot of spinal compression injuries including 7 compression fractures and some badly demorticed shoulders. I healed and went about my life until my mid 30's when my doctor found my earlier injuries were becoming arthritic and calcified. Except I hurt in places I never injured and often these places exceeded the issues I naturally expected elswhere.

So far nobody has associated my joint pain with CF. In part I don't think I have brought up unusual bone pain w/my CF specialist. On the flip side my diagnosis at 52 certainly didn't thrill me when I realized the damage done by this ignorance. Malnutrition as selective as fat soluble vitamins and all the cool stuff they contribute to good health include calcium uptake as well as some down right essential nutrients.

Two years ago a body wide bone scan indicated I am great for a 100yr old woman. It isn't just osteoporosis that nails us but malabsorption of key minerals to have good slick hard bone joints. I recommend you monitor your bone density even if you are 10yrs old. Malabsorption is a CF trait and deserves fully understanding what to take like AquaDEK or other CF specific vitamin, load extra D, B's and either a magnesium/calcium combined or calcium in some form that combines to properly be absorbed.

LL

 

[CysticKid]

Hi Everyone... EM, I'll tell you what makes a HUGE difference with me. This is something my doctor always rolls her eyes at, (altho she can't deny, at my age, I'm doing something right!) This simple thing works not just for my joints, but for my lungs too: drinking at least 1 to 2 pitchers of water a day. Not store-bought juice, not milk, not ice tea, sodas, non of that. (But I do love coffee)

Just plain ole water. I put a couple of cucumber slices and lemon in it, (like the spas do) tastes really refreshing! I try to make sure by 7 pm the pitcher is empty. Two pictures are better. No more pain, I'm telling you. And I have stairs in my house!

So did you used to have aches and pains that were alleviated when you started drinking lots of water or are you just sharing good advise in general? Also, when you say pitcher of water how many oz are you talking about? 64oz per pitcher so roughly a gallon of water a day?

 

[TreasureGoddess]

This was a strange one, but you may want to have your adrenal levels checked. When my son isn't feeling good, his levels drop very low. The docs put him on steroids (with a tapering dose to not shock the system when you go off them). We can tell it's coming because he begins hurting all over. While on the steroids, his general pain levels decrease. We try not to take them more than needed as steroids mess with growth as well as mess with blood sugar levels. We had many blood tests at well levels (or generally healthy levels) and also while infections and other sicknesses were happening. I'd never heard of this before but it was a solution for us for now.

 

[CyrilCrodius]

Wow! How weird! I came today to post a thread about leg pain, though it's a different pain from what you are describing, so it will receive its own thread.

If you are taking Cipro or Levaquin, it may have something to do with your pain. Of course there is the usual CF arthritis, but if you take a lot of fluoroquinolones, it's worth looking into it as a cause of your increased pain.

 

[dancer78]

So did you used to have aches and pains that were alleviated when you started drinking lots of water or are you just sharing good advise in general? Also, when you say pitcher of water how many oz are you talking about? 64oz per pitcher so roughly a gallon of water a day?

Yes I did. And there was a time in my 30's that I was really good about getting at least 3 bottles (at work) in me, but then my career started being more and more demanding, plus we drove up to a family farm on the weekends and worked. So I burned the candle for 7 days a week, for over 10 years, and it killed my water (and juice intake) and then my lungs.

I noticed I was exhausted all the time, but didn't connect it with my lungs, and also that things just hurt all over. Now, at my age I really feel it in my knees coming down the stairs in the morning if I haven't had enough water the day before.

A pitcher of water (small ones, got at Target) is roughly 2 to 3 bottles of water. A bigger pitcher might be easier; but I couldn't find one I liked at the time.

A person without CF is supposed to drink 4 bottles a day. Honestly I feel best when I've had 6, consistently, and that's 2 pitchers full. And what I had to do to get in the habit was fill up 2, put the slices in them and leave them on the counter in the kitchen, so I would see them through the day. Then 3 sips at a time, about every 30 minutes. (when I'm working I set the alarm on my iPhone.) Your can also carry bottles with you ( I know it's a pain.) When I do that I use a sharpie and number the lids, 1,2,3,4+. That way I know where I am on the intake, and also no one else drinks them.

It's hard to get it started because for 3 days, you're going to the bathroom all the time, but your body adjusts; it's temporary. Stay the course.

Another thing that was hard about it for me was I'd get so full I wouldn't want to eat. But again, your body adjusts, (and starts to love it) and then you start being able to hold more.

As it talks about in that book "Water: Your'e Not Sick, You're Thirsty" Dr. Batmanghelidj explains that a person's thirst mechanism can actually be turned off. So people say "But I'm not thirsty." (My dad always said that and never drank any. He has all sorts of health issues.) What happened with me was that once I started, I began to be so thirsty I couldn't stand it...had to keep drinking, and it seems this is what happened when my thirst mechanism was "turned on." Then, after 3 days, it calmed down. But in the middle of the 3-4 days it took me to adjust, was when I noticed I didn't ache all over any more.

Hope this helps. Again, know that the medical community scoffs at (still) Dr. B's theory. But there are many testimonials in his book from people with various "disorders" that were cured or at least symptoms greatly lessoned. Take a look: http://watercure.com And try it! I'm not saying it will take away CF... but it's helped me SO MUCH. Good luck and let me know if there's any other question...

 

[LittleLab4CF]

To attempt some payment for these eye opening payments I can contribute some toCF and the adrenals. Our bodies respond to stress of all sorts including injury and microbial attack. Pain initiates a cascade of events involving every body enhancing system. Like heavier breathing to elvate the metabolism. That is essentially what happens when we fight illness but also ignighting all of our life saving mechansms. Simple elevation in adrenaline begets elevated hormones including testosterone and soon everything is working overtime. It can be life saving.

CF at best is a constellation of chronic conditions. Something always seems to be a struggle and as such the production of adrenaline, cortisone and metabolic hormones like testosterone. Whether the body just loses its hightened response or in some cases the adrenal glands or whatever poop out and no longer produce effective quantities.

This effects length of illness, healing and general resilience to the environment. Since metabolic hormones have come to light I can't suggest strongly enough for CFers all to be tested for healthy levels of sex hormones. I had "low 'T'" in my mid 30's.

LL