Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group fybro? or something else?

Hello It has been a long time since I have posted on kickas. However I have been following Karens trips to Mayo and praying for her.

I am not for sure what is going on with me but I am experiencing pain beyond my AS. The pain is ALL over my body not just in my joints. I take 4-5 hour naps about 4 days out of the week. Right before I need a nap I have a fatigue that comes over me that it feels like if I even raise my arm it takes a lot of energy. I am so tired of sleeping. At night I have insomnia however once I go to sleep I sleep 8-9 hours but will still need a nap the next day. It is so crazy. I keep getting told to get on a schedule to go to sleep at the same time and wake up at the same time but my sleeping patterns are so crazy I have tried everything to figure it out. When I go to bed I am sooooo tired but it does not matter I stay awake. My primary gave me ambien. When I took it I would sleep for about 4 hours and wake straight up and be wide awake and had to take more. I started to notice that it made my heart race also. So I don't take it anymore..Very strange.

The pain feels like my muscles all over my body are heavy as if I ran a race or something that takes a lot of energy. It makes me so tired.

My question is... Does anyone know anything about fybromialga? I have read a little about it. I read that it is very common in patients with AS. I just can't get my head around what fybro really is. I don't understand. Also anything else you might think it could be.

I have been trying to get into a neurologist for the past 3 weeks. It has been a huge go around calling the neurologist office and calling my primary doc. The neurologist i was trying to see is one that my primary doc sent me to for a nerve test last fall. the neurologist will not take new patients unless my primary doc called them. I thought since I had already seen him before for a test ment I was a patient of his but I was wrong. Then this week I finally got an answer from my primary doc and they said the neurologist that i was trying to get into would not take me so they are setting up an appointment with another neuro. Why does it have to be so crazy to get into docs? I do not have HMO I have PPO so my insurance does make it where I need a referral.

What are some questions I should ask him? What should I be sure to tell him?

Thanks for your time
big hugs
Raquel

Hi Sweetheart!

First I would like to say that I have REALLY MISSED your being here and posting and hope you will jump back in.

Ok, Fibro..I have it and for me it's like I KNOW that I have it.

Here is how I look at it. AS takes everything out of you..fatigue, joint pain in all your joints or most and then there is the inflammation that interferes with it also so just having AS is hard enough.

When you have Fibro it is just like the same thing except instead of your joints it is ALL your muscles. The muscled right by your neck like if someone was going to put their hand on your shoulder. Like you said I can not hardly dry my hair because using those muscles just takes to much out of me. Holding a book up or a newspaper I cant do anymore. The muscles going up and down my back, my leg muscles, thighs and calves.

Another thing for me with Fibro is my skin has become really weird like some times I can not stand for ANYTHING to touch my skin. The wind, a fan, the shower, the sheets. Alot of times now I can not even wear undergarments because it is too painful.

I had to totally redo our bed and now we sleep with 1000 thread count sheets, not because that is what I wanted but that is the thread count it took to be comfortable enough so that I could sleep.

I use to love the sun hitting my face and now it is too painful. I can't wear certain fabrics because they rub my skin the wrong way..same thing for socks and shoes.

There are suppose to be like 16 or 18 pressure points the Dr. can push on to see since there is no clear rest for Fibro, my thoughts are if you have it you will know it it changes everything. I also have knots when I rub my skin like on the insides of my arms and legs not sure if that is related or just enlarged lymph nodes.

If you can go to the Dr. and have him push on the pressure points plus if any of this I have talked about is happening to you let him/her know. I am taking Lyrica for the pain..not sure if it helps since I am on so many other drugs.

I really hope that you don't have it and YES Fibro can make you bone tired, you sleep its not enough, you sleep enough its still not enough, then at times you have insomnia.

Anyway hopefully some of the others here will chime in, I am here if you want to talk or have any other questions just pm me.

Hugs, have missed you!

Lisa

it is good to see you again. sorry that you have been feeling so badly.

i don't have fibro, but have read a lot about it because for 11 years, the doctors always suspected it, but ultimately, most ruled it out. i just didn't have the fatigue that you talk about, or the muscle pain. just the "tender points" which are just my tendons sore at the entheses.

i'm so sorry you have fibro on top of AS, if that is the case.

sue

Lisa
good to hear from you. Do you have a neurologist here in town? If so do you like him/her? I don't have an appointment yet but my primary doc is setting me up with Dr. Edwards. She is at St. Johns.

The way you describe your fibro it really sounds like how i feel. However I don't have any trouble with anything touching my skin. walking and picking things up hurts my muscles. The muscles around my neck hurt all of the time. At first I thought it was from sleeping wrong. Then I thought it might be AS. In the morning I am stiff EVERYWHERE. Not just in my joints like AS. It feels like I have been run over by a truck. Don't you hate trying to explain how your pain is. I am never very good at it. LOL

Thank you so much for your post. We really need to get together sometime.

Big Hugs
Raquel

Sue
Good to hear from you also. How have you been doing? thanks for your post.

I hope you are doing well
big hugs
raquel

Hi, Raquel:


All I know about FM is that it is THE, if not one of the- most common mis-diagnoses for AS.

Quote:

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My question is... Does anyone know anything about fybromialga? I have read a little about it. I read that it is very common in patients with AS.

---

Well, if a rheumatologist presses HARD enough at each of the 18 diagnostic points, anyone with AS (or potentially ANYTHING) will meet their diagnostic criteria.

AS symptoms are very common in patients with active, improperly treated AS--not FM.

And AS causes a very deep fatigue and brain fog, too (and we almost universally describe it that way), but not usually the symmetrical muscle pains required for an FM diagnosis.

Candidiasis is probably a more common complication of AS than most physicians are aware, due to the immunosuppressive drugs, especially in combination with steroid usage more common in women.

Did you ever see Woody Allen's movie Sleeper? There was a vending machine that took confessions--you insert the money and it flashes ABSOLVED! and vends some religious trinket. Maybe we can also replace the doctors with vending machines, for all the good they do those of us with AS! It could dispense placebos and everyone would be cured, as long as they keep coming back for more...

Sorry, feeling more cynical tonight than usual--close friend in ICU after massive heart attack.

Regards,
John

I was mis-dx with FM before I found out I had AS. I was also dx with lyme which is a co-infection with AS. I am being cared for by a naturopathic physician. She has done wonders for me. I really feel like she knows her stuff and she cares. Although she is not against using drugs she has only once had to rx an antibotic for parasites. All the other recommendations have been supplements or natural products. When I started seeing her I could not hold down a job. Now I am working 30 plus hrs a wk. If you are interested in talking with her let me know and I will PM you with her info. For now may God help you and bless you!!!!

Dragonslayer
I don't know if it is fybro that I have but I do know one thing for sure.. It is not pain from my AS. It is very different. It is my understanding that the points that they push on to check for fybro are not in joints. I thought it was in muscle areas. The research that I have been doing on fybro says that AS is one of the causes of fybro. It is on every article that I read.

As for my fatigue... yes I have had fatigue with my AS for many years but the fatigue I am dealing with now is different. I call it like my radiation fatigue when I had cancer. I would work all day and then go for my radiation treatments every day for 7 weeks. Every night when I came home from my treatment I was soooo tired I could do nothing but lay on the couch. This fatigue I am dealing with now is like that.

I am praying that it is not fybro. I can not take the drugs for fybro. I have already been put on lyrica and neurotin for neuropathy and the side effects are to dangerous for me to take.

I mean no disrespect when I say this but I feel by you saying
" All I know about FM is that it is THE, if not one of the- most common miss-diagnoses for AS" it is taking away acceptance for those who have fybro. As an AS patient it is already hard enough for people to not understand what it is like to have AS. It's hard when people to say there is nothing wrong with me because I look fine. It must be even harder on those who have fybro also. I truly believe a person knows when something is different going on in their body.

Raquel

MJR
Thank you for your post. I have already been checked for lyme disease and it came up negative. As for my AS I started have signs of it when I was 19 and was not diagnosed until I was 36. The pain started off slow in my lower back and by the time I was around 26 my hips started hurting after I had sat for a period of time but the pain always went away after getting up and moving around so i did nothing abou it. It was not until I was 36 when my heels of my feet started hurting that I knew something was wrong and it was time to see a doctor. I was very lucky I quess you could say. I had a doctor that did all of the correct tests. By the time I had my bone scan the evidence was there. It is my quess if I would have gone earlier nothing would have come of it. It is my understanding that it can take up to 10 years for anything to show up on a bone scan. I was also tested for HLA-B27 and it was positvie. I did however see many doctors in my 20's for being tired all of the time. They would run blood tests but nothing ever showed up. I never told them about the pain in my back and hips at the time because I never thougth to put it all together. I have been on enbrel and now humira.

Where do you live? Do you live close to Tulsa OK? If so I would love to have the name of your doctor

How awesome that you can work. I have not been able to work since last June. It is very hard. I have always loved work and I am a very social person and love being around people. That is what I miss the most about not working. I want to work more than anything. I filed for disabilty in November and got turned down of course. The most crazy thing about it is the letter I got that said I was turned down. They did not even spell Ankylosing Spondylitis correct. It was not even close. I think they just make something up the first time it goes thru hopeing it will be the end. I have a lawyer so he is working on it for me. He has to keep telling me that just because I am filing for disability does not have to mean I will be on it forever. I can only pray he is right. However in the past year I have done nothing but go down hill. I also have spinal stenosis. I am hopeing that it is spinal stenosis that is causeing all of my problems and they can inject an epidural. I have had them in the past and they work sometimes but not always. But since I already have spinal stenosis it would be so much better for them to say all of my new symptoms is from that intsead of fybro.

thanks again for your post.

big hugs
Raquel

Raquel, I have been diagnosed with so much, FM included. The fatigue from everything is wearing me down. The pain is ongoing.

I asked for months - years - to be tested for Lupus. Oh, I was tested. I recently got a lab report back that showed I was tested for Anti-dsDNA a definitive test for Lupus. The result from this report was never given to me. I had to get them elsewhere. Normal = 0 Intermediate 1-15 High everything over - mine (36.1).

I have signs of connective tissue disorder (possibly RA as well). This is over and above Lupus. I have also been diagnosed with Celiac. It seems if you get one autoimmune disease others seem to follow. It is my understanding that FM is part of the autoimmune diseases.

Hope you have doctors who care enough to help, you get the answers for your debilitating fatigue.

Gerri