Fibromyalgia???

[thejohnsongang]

Hello all. I went to an immune specialist today to follow up with my constant fatigue and flu like symptoms at the urging of my PCP. Well she is running tests for RA and Lupus , but feels that it is truly fibromyalgia that is causing my problems along with the pots. Any one else have fibromyalgia? and if so what are your symptoms and how do you treat it. Just looking for info.

Thanks,

[pearsjon]

i am going to rhuematologist in nov. to try to answer that exact question. i have alot of pain everywhere. some days real bad others not so. doc says pots doesnt have that much pain wiht it. but all my joints swell and hurt right in front of or beside the joint. he thinks fibro. i believe they are going to do a spinal tap to look for something called "substance p". which can apparently produce these symps. i'll try to remember to come back here and let you know. i have been couch ridden for days and weeks cuz it's so bad. if u don't here from me. get on to me. my memory *****.

[gdomaracki]

Hi,

When I was struggling with fibro, it felt like I had the flu everyday but without the fever. It was painful to do just about anything, and my body ached all the time. Not a plesant feeling! Luckily, mine has seemed to ease and only flares up when my pots is too. I do hope you find relief from this condition, it can be quite miserable.

Nicole

[thejohnsongang]

Sorry it has taken me so long to respond. It's been crazy busy here. I will get my test results for the lupus, lyme, RA in 2 weeks. She wanted to rule those out before she game me a definite dx of fibromyalgia. My symptoms have been constant fatigue,chest pain/pressure, sore spots on my body without bruising or injury, stiff joints and hard to move sometimes and feeling like I have the flu. Just ache all over. My cardio said it's not pots and to check with immunology to check for other things. Not sure what it is but I'm sure tired of being sick and tired all the time. Some days I'm ok, most days I can tolerate it and some days I just can't get out of bed. I'm just getting wore out from dealing with the pain all the time.

What do you do for your pain/fatigue? Is there any treatment that helps? I've never heard of substance p. What is it?

[persephone]

I have it alongside pots. I had a great deal of trouble with Cymbalta - although it might help with the brain fog and the aches, in my opinion, it is at a real cost. I'm doing really well now on gabapentin twice a day for the pain. It makes me feel more like I'm on an even keel.

Do you have the 'trigger point' pains? There are certain trigger points on the body- eg, back of the neck and sholders and elbows) that cause pain disproportionate to the pressure applied to them.

There is a theory that Fibromyalgia is autonomic too- tho I can't remember where I read that.

Fibro, like POTS, can get worse after stress or a lack of sleep.

[thejohnsongang]

Yes I do have the trigger points. On my chest, small of my back and buttocks. I actually broke into tears when the doctor pushed on them. This is one of the reasons she thinks it is Fibro. We did talk about using an anti depressant to treat it if that is what she dx me with. She mentioned cymbalta, but I took that before I was dx with pots, since my doctors thought I originally was just depressed. I hated the stuff. It made me feel horrible. I was also tried on wellbutrin and prozac. The wellbutrin mad me feel depressed, but the prozac did help some. I just can't remember why I stopped taking it. I think it was to find the correct dx, but I'm not sure. Lack of sleep is not something I usually have to deal with...I usually sleep way to long. but on the occasions I don't not get enough sleep I feel horrible the next day pain and pots wise.

[desiree942]

Yes I do have the trigger points. On my chest, small of my back and buttocks. I actually broke into tears when the doctor pushed on them. This is one of the reasons she thinks it is Fibro. We did talk about using an anti depressant to treat it if that is what she dx me with. She mentioned cymbalta, but I took that before I was dx with pots, since my doctors thought I originally was just depressed. I hated the stuff. It made me feel horrible. I was also tried on wellbutrin and prozac. The wellbutrin mad me feel depressed, but the prozac did help some. I just can't remember why I stopped taking it. I think it was to find the correct dx, but I'm not sure. Lack of sleep is not something I usually have to deal with...I usually sleep way to long. but on the occasions I don't not get enough sleep I feel horrible the next day pain and pots wise.

Have you been tested for Vitamin D deficiency --Dr. Grubb had me tested and I was at a ZERO level. I was put on a prescription D supplement and made major improvement with my weakness and fatigue. I ask because now that I have read up on D deficiency experts say it should be checked in any one thought to have Fibro, sometimes it is actually a vitamin D deficiency.

[morgan617]

I've had fibro for 32 years. It waxes and wanes. I took something to help with the disruptive sleep, a long time ago, but I have never taken anything else for it. The poor sleep patterns (typically a lot of alpha waves spiking in your deepest sleep) won't allow your muscles to get the much needed rest and repair they need, so they have much more of tendency for injury. They are never relaxed and rested. I just learned to deal with it.

It's worse for some than others, I have days where it takes all I've got to get around, but the alternative is lying like a veg on my couch from pain meds, which only mask symptoms, it's not like they cure it. However, some people do much better on them. NSAIDS are commonly prescribed for it. Cymbalta is the new "miracle" drug of the moment. I can't take anti depressants, they cause cardiac problems with me. It either seems to drastically improve people or they don't do well at all.

Massage, heat or ice, whichever feels best helps me. ( I use heat, heating pads are my life savers) I used to get a lot of massage and that was the best thing I did for it, but some people say it hurts. I found it hurt, but I felt better afterwards. Typically they say 11 of 18 trigger points have to be positive, but I think they are getting away from that. I don't even tell doctors I have it anymore, because where I live, there is such ignorance and such a stigma about it. Like everything we have I guess.

You typically get the diagnosis of fibro when everything else comes back negative or borderline. Fibro doesn't usually cause swelling or permanent damage, however they believe we get constant tiny muscle tears from exertion that doesn't bother normal people. I have no idea what P factor is. I get a lot of tendonitis from it. In my shoulders, elbows, wrists and stuff, but it doesn't cause you to develop deformities like RA does. It doesn't elevate your sed rate, RA factors are negative. My ANA has been positive forever, but they just ignore it. I've had corisone shots in just about every joint and more than once. Those also work really well for me, and I don't think they are any more painful than any other kind of injection. No worse than a shot in the buttinski....

That's about it....good luck with your tests sweetie...morgan

[mom4cem]

I was diagnosed with fibro back in the early 90's. Started with flu like symptons, aches in my wrists, knees, everywhere. Tested for lupus, lyme etc. All negative. The rheumy did the pressure points on me and I had most all. He gave me some info on it and at that time, that was a lot. Over the years when I told any dr. about my having fibro, all I heard was that it was a wastebasket diagnosis. I also found out I had MVP and dysautonomia around the same time too.

I found eliminating sugar, taking warm baths and only doing what I could do helped a lot. There are some good books out on it now with some helpful info. There is also a cream, specifically for fibro, recommended by the National Fibro Assoc, called O24. No salicylates in it. Smells,(camphor in it) but it did help to ease the aches/pains.

Feel better.

[Guest GayleP]

Hello all. I went to an immune specialist today to follow up with my constant fatigue and flu like symptoms at the urging of my PCP. Well she is running tests for RA and Lupus , but feels that it is truly fibromyalgia that is causing my problems along with the pots. Any one else have fibromyalgia? and if so what are your symptoms and how do you treat it. Just looking for info.

Thanks,

I've got the same thing going on. I've been very achy, both muscles and joints with flu like symtoms for the past few weeks. And horrible fatigue, much worse than usual. At first I thought it was a virus. My PCP has run a lot of tests, for RA, Lupus etc... and so far nothing has come back positive. Although I'm a little confused by my RF results.

Anyhow, at this point I'm assuming that I must have Fibromyalgia. I just wish there was a definite way to diagnose it.

[Sophia3]

Substance P was written up years ago in the CFIDS Chronicle and I can't find my old issues.

Here is a quick blurb but I have never had a spinal tap to check for his. Had a horrible reaction to a spinal situation years ago and triggered vomiting and killer headache for days.

I first had CFS dx and later horrible pain from multiple sleep nights and studies at a sleep lab. Even took GHB that "CURED" some Fm pts but it did nothing for me when I was in the study about 10 years ago.

http://www.ncbi.nlm.nih.gov/sites/entrez?c...pt=AbstractPlus

[Poohbear]

Check out this pubmed abstract as well...it has some newer info and may lead you some additional searching ideas if you so choose to look into it.

http://www.ncbi.nlm.nih.gov/sites/entrez?D...Pubmed_RVDocSum

[thejohnsongang]

Well I went back to the immune specialist today for my test results. All in all it was good...everything turned out negative. But on the down side I was dx with FM today. She said that since nothing else has shown up and since I have pressure points and with the symptoms I have that is the dx she is going with. She told me to follow up with my PCP and get started on mild antidepressants and to work on getting "good restful sleep" as well as start on an exercise program. Who is she kidding. My exercise program consists of me getting my butt out of bed in the morning. But I will talk with my PCP about it and try to do some sort of exercise.

I just feel that this is another dead end. I believe in FM, but know that it also is the dumping ground, for some people when nothing else is found, by some doctors. It was just a depressing appointment. I will just try what is suggest and hope I get some relief. I don't want to have to live my life (if that's what you call sleeping and hurting all the time) being on pain pills.

Thanks for the links and I will be doing my homework on this one.

[Mrs. Burschman]

I'm sorry to hear it, Nolie. It stinks when you have to add a new diagnosis to an already impressive list of problems (believe me, I understand what that's like ... PCOS and POTS within five months of each other!)

Anyway, just wanted to let you know that someone in South Dakota cares!

[morgan617]

The only thing I can say is, there is more and more irrefutable evidence that Fibro is a very real disorder, and we can hope, with that knowledge, will come more understanding.

I'm waiting for the day they change that darn CFS to something more appropriate! It doesn't rain, but that it pors sometimes. I am sorry you are going through this....

[Sophia3]

I see this commercial for FM awareness that talks about this link in their adds.

Have you checked it out?

http://fibrohope.org/

Hope you can find something to help. It can be overwhelming at first. SLEEP is critical so if that's an issue, address that first if you can.

[thejohnsongang]

Thanks for the link. I checked it out and signed up. After reading the whole site, I feel like it was made just for me. I have all the symptoms, and all of the tender points except 4. I go see my PCP today and will discuss all the options with them. The thought of trying to balance another illness is just overwhelming. I just feel so down about all of it right now. In the past year I have had so my dx and seen so many doctors I feel like I'm running in circles. Since Sept of 2006 I have had the following added to my list of dx POTS, NMH, PCOS, evelated testosterone and now FM. What a year it has been. Like Morgan said it doesn't just rain...it pours. That's how I feel. With all of my issues and now my daughters health issues...it's just to much most of the time. Thank god I have a supportive husband and family. I will be talking with my PCP about the substance P and the vitamin D deficiency. I hope we can find some answers and meds that work for me. I just get so sick of being so tired all of the time and of all the pain. I feel like I've had the flu for years. I sleep so much now I feel like I sleep most of my life away. I sleep on average 14-16 hours a day. Most day I end up taking a 1-2 hour nap on top of that. I just wake up tired and exhausted and then during the day I get this "wave" of exhaustion that comes over me and I can't keep my eyes open. Just taking a shower/bath is such a burden on my body let alone trying to do anything else around the house. I miss being able to do things with my kids, playing sports with them, going on hikes/walks with them....and I miss my private life with my husband. It has all changed so much. I went from a very active person at 33 to this lump of a person at 36. I use to be such a happy, outgoing full of life person and now I avoid people, avoid going places and can't do much at all. Some days I push myself to the point of exhaustion, just to try to have a glimpse of my old life. I have a few friends I keep in touch with by phone or e-mail, but all the others have just drifted out of my life due to my illness. I guess I learned who my true friends were. My husband is a saint about it all. He works full time, then comes home and does the laundry, cleans the house, does the dishes and cooks most of the time. He always makes time to spend with the kids and to massage my legs and back for me. He goes with me to all of my doctor appointments, reminds me to take my medication and even helps me shower/bathe on the days its really bad. He doesn't even complain about my unshaved legs. I am very lucky to have found such a person. We had only been married 1 year when I got sick. We dated for 2 before that. He has been my rock through all of this. Since finding this site I've learned to cope with things better knowing that there are others that have the same issues and feel the same that I do. It's been a great source of information, friendship and understanding. Thanks to all of you that have helped me over the past year.

[Mrs. Burschman]

Nolie,

This won't probably help with the physical symptoms of anything, but it might help psychologically ...

It seems like so many of the chronic conditions I have might easily all be attributable to the POTS -- or dysautonomia. So instead of thinking of this huge list of things I have, I'm trying to focus more on the fact that my autonomic nervous system is out of balance. Irritable bowel? My nervous system is out of whack. Interstitial cystitis? The nerves that innervate the bladder wall (my sympathetic nerves) are on high alert. PCOS? I even asked my reproductive endocrinologist about this one. He said that having dysautonomia could easily cause my body to be slightly out of balance when it comes to hormones. Migraines? Well, lots of people with POTS get that.

I guess what I'm saying is, I don't know if it will help you, but being able to link everything together in my mind seems to help me. In some strange way, I guess it makes me feel less sick to know that it might all be related.

I'm glad that your husband is understanding. That's a blessing!

Sending you a hug (really gentle one!)

[thejohnsongang]

Thanks for the encouragement. I know that this is all linked together, but I just get depressed sometimes. I wonder if I will ever feel "well" again. A lot of the local doctors here don't believe in FM and think its just depression. I just get so tired of hearing that word. We all do. I went to see my PCP and he was great today as usual and we went over all of my health issues and tests again. He said that since I got the FM dx he wanted me to try something to see if it helped. He said that most people with FM have a vitamin D deficiency as well as low to no levels of certain vitamins. Since my insurance won't pay for vitamin testing he wants me to try the following for the next couple of months and he is going to follow me more closely to see if they help with any of my symptoms:

Daily he wants me to take;

Multi Vitamin with Iron

Vitamin C 1000mg

Vitamin D 1000IU

Selenium 50mcg

Zinc 50mg

Biotin 1000mcg

Then monthly he wants me to take 1 Vitamin D2 50,000IU.

As well as try Yoga for Dummies. If I can tolerate it.

He said this might help with my muscle/joint pain. He's not sure, but it's worth a shot. He also said a local health department offers a free clinic for people with FM. They work on relaxation and stretching as well as different ways to deal with chronic pain. He wasn't sure if they were still offering it, but wanted me to check into it. He also said that since I had tried anti-depressants in the past with no relief, there was no need to try again.

So hopefully we will get a little relief if not more. Has anyone tried this vitamin mix before? If so how did it work for you?

We did talk a little about substance P. If I understood him right ( I get confused a lot) it has something to do with the amount of pain receptors in our body and the higher the substance P the more pain you are in?????? does this sound right?

On a lighter and better note he did say that eating 1 lg square of 85% pure cocoa dark chocolate a day would be good for me. Whooooa!!!! a prescription to eat chocolate. What a way to end a doctors appointment.

I'm feeling a little better today and not as down about it all. I still feel the same so the dx doesn't change anything..except for the fact that I'll be swallowing more pills for awhile, maybe longer if they help.

[Rachel]

Hi Nolie,

I'm glad that your pcp is so helpful and that you have a plan of treatment. I hope that all of these things work for you.

I have not been found to have any vitamin deficiencies, but I know that I feel better when I take a high-potency multi-vitamin daily. I've actually never had my vitamin levels checked when I'm not on the vitamin, though, so that could be why my levels were normal. My vitamin is not as high potency as the ones you're taking, but it does definitely help.

I hope you can still find the free clinic for people with FM. That would be great!

What symptoms does the dark chocolate help with? That's great that you have a prescription to eat chocolate! Now that's some medicine I'd never get tired of taking!

Take care,

Rachel

[Mrs. Burschman]

Yeah, I eat enough chocolate, maybe I should add that to my RX list in my signature!

Amy

[Sushi]

Persephone and others,

I've had fibro for many years and was positive for all the trigger points. Pain was a BIG problem--even turning a door knob

Then I was diagnosed with dysautonomia and treated for that with a number of medications, and guess what? Over the months the fibro has gone away almost entirely, which does make me think it also has a neuro origin. The medication that did it for me was strattera. It was prescribed because it has helped many dysautonomia patients in various ways, but for me it also worked on the fibro. I was dreading growing older with more and more pain medication.

[Mrs. Burschman]

Nolie,

Check out this article. It goes along with what Sushi is saying:

http://www.fmpartnership.org/Files/Website...Explanation.htm

[thejohnsongang]

Thanks for the article. I will share this with my PCP and cardiologist. I have pain and that has been one of my largest complaints for years. Along with the fatigue and dizziness and brain fog. I have learned that medications help some, but I am on only a few for the POTS/NMH. The vitamins were just added to make sure it was not a vitamin deficiency and to see if they helped. Of all the meds I have tried, none have helped with the fatigue and pain. I am currently on Florinef 0.1mg, Coreg CR 40mg, midodrine 10mg every 4 hrs and asprin 81mg for my pots treatment. I take 3 allergy medications, zyrtec, singular and astelin, just so I can breath and this week they added eye drops (optivar) and eye cream(???) as they have been going crazy and my eyes are swelling shut and itching like the dickens. I also take a mulit vitamin along with all the new Vitamins. One pill for my IBS (Welchol 625 mg) and one for my reflux(priolec OTC 40mg). I feel like a drug store.

I can only be up for @ 2 hours before I have lay down. Not only for the BP/HR issue, but for my legs and feet. If I stay up longer I get a burning/stinging sensation in my legs and then the start to tingle and ache. Sometimes they go numb. When I wait this long and then lay down the pain in my legs/feet is unbearable. I have to take pain medication and get my husband to massage my feet/legs and I usually end up crying because they hurt so bad. It feels like a bad tooth ache. Then when I try to stand again later or in the morning I can't. I can't put pressure on my feet at all and end up sitting on the side of the bed for ever making my feet slowly take the weight until I can tolerate it. Then I know it's going to be a VERY long day. I sometimes get this feeling in my arms also. No one has been able to explain why this happens. Along with all of this I am dizzy/ lightheaded, fatigued, have Tachy, am out of breath, ache all over, keep cotton mouth, have severe allergies, etc, etc...The list goes on as all of you know.

My daughters cardiologist told me that FM runs hand in hand with POTS/NMH and all the other dysautonomic disorders. I feel that they are one in the same, but some doctors say no. My hr and bp are great when I'm sitting around or laying around doing nothing, but as soon as I start to get up and or move around..it jumps in like a hawk on a rat.

As for the chocolate I can't remember what he said it was good for..I forget things a lot. I will be sure to ask him again at my next visit. I just remember him telling me to make sure it was only the dark chocolate and it had to be the 85% or maybe it was 65% pure caco. You can find it in the candy isle at the grocery story. I do remember him telling me that. So It's off and trying this new thing to see if it works. I hope it at least helps. As always I was told to get good sleep, exercise and eat good as well as high salt and tons of water. I think all doctors are learning to put that in their treatment program.

Nolie