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Posted 3/7/2015 12:56 AM (GMT 0)
I just joined this forum but have been suffering with fibro for over 5 years. I am hoping to find some support and to help support others with this condition. I really feel the need to relate to other people dealing with this. It's getting worse and harder to manage.
Posted 3/7/2015 1:03 AM (GMT 0)
Hi and welcome...I'm pretty new here but an old soul and dx'd with FM in 1999, believe thyroid is so connected to this FM issue...and adrenals and hormones... I've addressed these and continue to work on them. I use all supps for FM issues and also deal with OA and mess from hip replacement...

It would be nice I think to know ages of folks we talk to...am I talking to a younger person or one closer to my age, I'm 76 and this hit me when I was 61.

Anyway, welcome...and you will hear a lot from others and their treatments... J
Posted 3/7/2015 1:18 AM (GMT 0)
Thank you for responding. I haven't really been involved with any forums. I am 36 yrs old mother of two young children. I was diagnosed over 5 years ago. I definitely believe that hormones are connected. My pain intensifies with my menstrual cycle but is not limited and flare ups occur other times as well. My husband has been deployed for over a year now and I know stress is a major factor as well. But my heads spins when I try to figure this out because there are so many variables.
Posted 3/7/2015 1:22 AM (GMT 0)
Welcome, purple.
I was diagnosed with fibro a few years ago. Fibromyalgia is thought to be caused by overactive nerves, but there is no known cause or cure as of yet.

We welcome people here and you will be welcomed by others as they come on. This is a very warm and welcoming group of ladies and men of various ages.

Please feel free to ask questions and vent. We're not doctors here, but we see a lot. 😆
Also what works for one doesn't necessarily work for everyone. It's a trial and error thing for us.
So welcome.😀
Posted 3/7/2015 1:48 AM (GMT 0)
I also wanted to add that I have SI joint dysfunction. I've been to rheumatologists , physical therapists , chiropractor. My symptoms first became extreme during pregnancy. After healing from the emergency c-section and still having chronic pain. The doctors diagnosed me with fibro. I don't want to complain but I'm frustrated. The common treatments that doctors have tried on me don't work for me. Medications like lyrica and cymbalta did not help. My pain was getting worse during physical therapy . Pool therapy (not hot tub) was traumatizing. Stretching seems to make me worse. While I'm stretching I feel fine but I feel the pain later on. I tried Pilates last month and it seemed to work great until I flared up again. But I have not been able to keep a regular cardio. It seems that anything on my feet is harder. I can't even stand for long without pain. I talk more about the pain because that seems to be the worse symptom but I do have others like fatigue, fibro fog, sensitivity to temperatures , etc. I think I need to stop because I'm going on and on. Sorry
Posted 3/7/2015 2:04 AM (GMT 0)
Welcome and never apologize for ranting, we all do it and understand. Some days we just need to whine, and for someone to understand, you'll find that here. Some days you'll have questions and usually you'll find answers here. Remember we are all individuals here and what works for one might not work for the next, but keep on trying things suggested and hopefully you'll find something that will work.

Again, Welcome you've found a great forum full of supportive and caring people that above all else, understand how you're feeling!!
Posted 3/7/2015 2:05 AM (GMT 0)
Thank you Joy. I agree, what works for one may not work for another. I just started Pilates and using a foam roller for deep pains. It helped last month but now I am having a bad flare up and can't break out of it. When I first went to the chiropractor , I got excited because I was feeling so much better , but it plateaued, pain came back and ended too costly .
Posted 3/7/2015 2:07 AM (GMT 0)
Thank you , that sounds so good to hear !
Posted 3/7/2015 3:22 AM (GMT 0)
What the most annoying thing about fibro is you're never fully pain free. You could wake up feeling great and within an hour be yelling in pain.
Posted 3/7/2015 3:26 AM (GMT 0)
Yes the pain is constant but varies in levels.
Posted 3/7/2015 3:50 AM (GMT 0)
Hi Purple

Like you I was diagnosed after my 2nd child. I had emergency sections with both, unfortunately. That was about 16 years ago now. I just turned 44, ugh, it hurts just to type that number! Lol. I, like you, have lots of pain. I have stiffness too but the pains the worst.

Are you on Cymbalta or Lyrica? Any of the others?
Posted 3/7/2015 3:58 AM (GMT 0)
Hi Betsy , I've tried lyrica , cymbalta , flexeril. They don't work. I take amitriptyline nightly to help with sleep and pain meds during the day. I get alot of the stiffness in my hips. Have you tried the trigger point therapy book? I'm thinking about it.
Posted 3/7/2015 4:56 AM (GMT 0)
A lot of stiffness in hips sounds like osteoarthritis to me. One MD I hear on the radio and he does PRP and Stem Cells injections and knows a lot....says once a person does surgery and you had C sections, OA sets in....I was hit with the Fibro stuff at 61 and it was an emotional trauma, fight/flight/fright...hypothalamus connection.

After this hip replacement, my back is stiffer than ever....again major surgery...major trauma to body. I do exercises on my to help loosen the hips somewhat....it helps for a while and sitting for lengths of times, makes it worse.....compresses everything...

One exercise I like on my bed is rotating the hips, knees up, feet on bed rock back and forth....I do this a few times a day.....

Don't push yourself but do some movement....J
Posted 3/7/2015 6:24 AM (GMT 0)
Hi purple, the trigger point book worked really well for my hips, i was in physical therapy for it a good bit , til i learned to release the trigger points myself.

I use some low dose meds, heat, stretching, acupressure, supplements. When i hit a flare i have a toolbox of things to help

Its a great forum! Welcome.

I think i get maybe 50% of my help from meds and 50 from self help measures, so we can really help ourselves.
Posted 3/7/2015 12:49 PM (GMT 0)
Thank you any suggestions, I appreciate! I used to be best friends with my heating pad but these days it only helps with mild pain. I feel like I need something more aggressive with the deep pains. I found the foam roller helps with areas like my tailbone, hips, it band. But for my ankles, it's harder. The chiropractor was able to pull my legs which felt like the hip socket and ankles were popped, that was nice. But this pain is constantly , I can't afford to go to a chiropractor everyday. Any ideas with your toolbox that you can share , I appreciate!! Also my chiro would not massage but press firmly in pressure points and it felt wonderful. If you think that might be similar to this point ? My concern is I don't know how I could apply that much pressure myself . It was better than a massage to have the pressure . I used to have a cheap massage tool, but I twisted it around my ankles so much, and broke it, lol.
Posted 3/7/2015 12:57 PM (GMT 0)
Hi, Purple Lynx, and welcome! I'm sorry you are dealing with this pain but you have come to a good place. We have wonderful members who love to help one another and, as a bonus, we do care about each other. I think you will like it here.

The description of what you are dealing with sounds very much like fibro...but also a few other illnesses, too. There are other illnesses that have many of the same symptoms as fibro and need to be ruled out. Lyme disease and lupus are a couple of them. If you have gone through a myriad of testing, maybe these have been ruled out. My only question is that fibro isn't considered a progressive illness. Our pain waxes and wanes but we don't usually get worse and worse. You implied that this is what is happening to you.

We are not doctors here but do have suggestions as to what has helped us. You will see quite a variety, too, because what helps some doesn't necessarily help another. But, if you decide to try something different, be sure to pass it by your doctor since many drugs and supplements can interact with one another.

I chose not to try Cymbalta, Lyrica, or Savella. I decided to try a more natural approach and this worked for me. I use ibuprofen with food, Tylenol, vitamin D3, magnesium malate, and a muscle relaxer called Robaxin that has made a significant difference in my pain and fatigue. I only take half of what was prescribed so I don't get side effects from it.

I also walk daily as a gentle form of exercise and I swim in the warmer weather, too. I do stretching exercises and I pace myself when doing things. I do all of the above and this helps me be in control of the pain and I've had a full and enjoyable life in spite of this illness! By the way, I've had fibro for 28 years and I'll be 68 years old next month but feel good! I've been spending the past three days doing a lot of gardening, which I love, and will be heading out again after breakfast. Moving really helps. If you sit or lay too long you will be stiff as a board and have more pain.

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about fibro and you will learn a lot there. Good starting links for you would be Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. You just might see yourself there. You will find links about vitamin D3 and magnesium malate and how they work in the body. All of Fibro 101 is good so do read it.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
Posted 3/7/2015 1:05 PM (GMT 0)
I had the blood test done for arthritis came back negative however my mom has OA. And has suggested to me that it might be possible that its just not showing up on test yet. I believe this has to do with the SI joint from the lax joints due to hormones during pregnancy, child birth and nursing both of my children but my body has never been able to restore it self, but I don't know really and I mentally get exhausted trying to figure it out. I'm 36 and I question the doc of I was going thru early menopause because of hormonal symptoms( night sweats, hot flashes, but freezing cold in 70 degrees???? ). I know you and I are not the same age but any light you can shed, I appreciate. Thank you.

jaminhealth said...
A lot of stiffness in hips sounds like osteoarthritis to me. One MD I hear on the radio and he does PRP and Stem Cells injections and knows a lot....says once a person does surgery and you had C sections, OA sets in....I was hit with the Fibro stuff at 61 and it was an emotional trauma, fight/flight/fright...hypothalamus connection.

After this hip replacement, my back is stiffer than ever....again major surgery...major trauma to body. I do exercises on my to help loosen the hips somewhat....it helps for a while and sitting for lengths of times, makes it worse.....compresses everything...

One exercise I like on my bed is rotating the hips, knees up, feet on bed rock back and forth....I do this a few times a day.....



Don't push yourself but do some movement....J

Posted 3/7/2015 1:17 PM (GMT 0)
Hi sherrine, I do believe my situation is not isolated to fibro only , recently discovered the si joint dysfunction which I believe can trigger my fibro. All in all my pain is so intense and widespread it's hard to pin point at times. I saw you recommended the trigger point workbook and I am thinking about getting because. I have deep pain that feels good with hard pressure applied. Also, I liked seeing scripture referenced on your replies. Any ideas, and encouragement in the Word, is appreciated. Thank you!!!

Sherrine said...
Hi, Purple Lynx, and welcome! I'm sorry you are dealing with this pain but you have come to a good place. We have wonderful members who love to help one another and, as a bonus, we do care about each other. I think you will like it here.

The description of what you are dealing with sounds very much like fibro...but also a few other illnesses, too. There are other illnesses that have many of the same symptoms as fibro and need to be ruled out. Lyme disease and lupus are a couple of them. If you have gone through a myriad of testing, maybe these have been ruled out. My only question is that fibro isn't considered a progressive illness. Our pain waxes and wanes but we don't usually get worse and worse. You implied that this is what is happening to you.

We are not doctors here but do have suggestions as to what has helped us. You will see quite a variety, too, because what helps some doesn't necessarily help another. But, if you decide to try something different, be sure to pass it by your doctor since many drugs and supplements can interact with one another.

I chose not to try Cymbalta, Lyrica, or Savella. I decided to try a more natural approach and this worked for me. I use ibuprofen with food, Tylenol, vitamin D3, magnesium malate, and a muscle relaxer called Robaxin that has made a significant difference in my pain and fatigue. I only take half of what was prescribed so I don't get side effects from it.

I also walk daily as a gentle form of exercise and I swim in the warmer weather, too. I do stretching exercises and I pace myself when doing things. I do all of the above and this helps me be in control of the pain and I've had a full and enjoyable life in spite of this illness! By the way, I've had fibro for 28 years and I'll be 68 years old next month but feel good! I've been spending the past three days doing a lot of gardening, which I love, and will be heading out again after breakfast. Moving really helps. If you sit or lay too long you will be stiff as a board and have more pain.

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about fibro and you will learn a lot there. Good starting links for you would be Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. You just might see yourself there. You will find links about vitamin D3 and magnesium malate and how they work in the body. All of Fibro 101 is good so do read it.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine

Posted 3/7/2015 2:27 PM (GMT 0)
Your other problems are probably making it seem like you are getting worse. Hopefully you can get them under control, too.

Purple, you don't have to box posts you are referring to. I'm not sure why that option is there but, by using it, it takes up a lot of space on the forum. Thanks!

I do think you would get good use from the book. The trigger points for my shoulder were found in my chest wall, top of shoulder and behind the shoulder and also the neck! I would never have thought to look all those places. Anyway, when I would feel the knots, I would press on them as hard as I could stand and then massage and repeat this. Then I'd repeat it all again several hours later. (I learned to do this from my massage therapist since that's what she does to me when I get a massage.). My shoulder was so bad that it took a few weeks to get rid of the pain but I was getting less and less pain right along. Also drink a lot or water when you do this. It helps flush out toxins that you are releasing. I do that after my massages, too.

I have used this for my neck and sides, too, and it's worked every time. Sure beats pills and shots. yeah Hope this works for you also.

A positive attitude helps so much, too. Studies have proven this to be true. I put a link in Fibro 101 about how to maintain a positive attitude when you have chronic pain. It's really good. I'm also glad you liked the scripture I put in my signature. This helped me kick anxiety to the curb and so many of us suffer from that because of the nature of this illness.

Sherrine
Posted 3/7/2015 4:32 PM (GMT 0)
Sherrine, thank you for tips. Sometimes especially during a major flare up positive attitude is very hard and gets harder. As time goes by dealing with fibro is tuff and on top of that mothering 2 young kids is the Most challenging while my husband is deployed . It is by the grace of God that sustains me.
Posted 3/7/2015 4:48 PM (GMT 0)
I have an old ankle injury which can really flare up , esp if i i am on my feet a lot all day..i use a topical pain reliever soothanol x2...after my shower and it keeps the pain down so i can stay on my feet..

I also have a home pulsed laser unit which can take the sharp pain out of the ankle..but they are pricey..

Do you think the ankle pain is from the fibro? We can get joint pain.but its usually the soft tissue around the joint giving us issues..

At one time the ankle got so bad that i saw an ankle specialist and they used a pulsed unit to put an anti inflammatory directly into the joint, my therapist. Scoffed at the methos, but it did help me ..

Later they found an old injury that never showed up on tests..the ankle was jammed..so they relocated it..which fixed a lot of it but there is some damage there and i self treat it...

For the tight hip, do they feel almost locked? The book will tell you to lay on the floor and move a tennis ball to points under your hip..let it dig in , this can often release hip trigger points.. The tennis ball was too hard for me, but i can still do it with a rubber ball the same size.

Post Edited (Ljm2014) : 3/7/2015 9:53:06 AM (GMT-7)

Posted 3/7/2015 4:53 PM (GMT 0)
This is when that link can be helpful. Also, I sometimes suggest that people make a list if the negative things in their life and the positive things. Don't forget things like vision, hearing, a roof over your head. These are positive things we all take for granted. Usually they will find that the positive list is far longer and that puts a smile on their face. Life isn't as bad as they were thinking.

Fibro is hard when you have young children. When I was hit with fibro I had three young children and a severe case of Crohn's disease where I had to run to the bathroom about 25 times a day. But I took one day at a time and made it through. You will too! Better days are coming. Once you find what helps you control your pain, you will be able to live a more normal life. I've done things I thought I could never do but, I always try and 99% of the time I surprise myself.

Do thank your husband for me for his service to this great nation. His job is difficult and selfless and I do appreciate his efforts.

Sherrine
Posted 3/7/2015 5:07 PM (GMT 0)
I believe the ankle pain was also from pregnancy . After I had my babies I would not be able to walk at times due to almost feeling like it was twisted . But the very first time I had the achy pain in ankles was before I had children , my ankles would ache during PMS and back then j could take ibprophen. I forgot all about that until i was talking to my rheumatologist and it came back to my memory.

I don't get the twisted feeling anymore , I just can't be on my feet more than a few minutes without pain . The pain is deep all over the ankle. My hips get stiff and pain as well as, tail bone , pelivic all around those areas. My next step is to go to an orthopedic to look at my SI joint. I believe the SI joint is triggering alot of my fibro flare ups . Have you been to an orthopedic ? I'm in Florida and still looking for a doctor . So far the doctors that I have seen haven't been able to help me. I get bits of information from them and I try to research online . I am also looking at going to an "integrated doctor" .
Posted 3/7/2015 5:10 PM (GMT 0)
Oh I forgot to mention, I don't seem to have inflammation , just deep pain in the ankles.
Posted 3/7/2015 5:17 PM (GMT 0)
Hi Purple

Sorry I hit the submit button to soon.
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