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Posted By : chi'smom - 2/18/2017 3:12 PM
I know people with fibro (and even those without, I'm sure) can get trigger points in the abdomen/pelvis, but just wondering if anyone else experiences this. I get extreme pain and tenderness in the area just above the groin and also the very upper thigh in the back of the leg and the inner thigh. I have had fibro pain for many years, but this is really extreme (it is almost too sore to even press on, which I will try to do to see if it will release the trigger, but no luck). I will get these "flares" of this type of pain outside of the general fibro pain maybe four or five times a year; it will last a week or so and then abate. Just curious if anyone else notices this? Maybe it's just another type of flare. And if anyone does get it, whether anything in particular has helped. Thank you.

Posted By : Ljm2014 - 2/18/2017 3:28 PM
I can get something similar in the top front of thigh..

It would just about cripple me..i used to have to bet therapy to get it worked out ..

I studied the trigger pain workbook..and am more able to get it to release on my own now..

You can also google trigger points in particular areas and there are you tube videos telling you how to do releases..

Good luck and let us know how you do

Lj

Posted By : Sherrine - 2/18/2017 3:55 PM
I had something similar and it got so I could barely lift my feet to walk. The pain was unbelievable. It turned out to be sacroiliitis and I was given ibuprofen and a muscle relaxer to help. That works great for me.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : chi'smom - 2/18/2017 6:01 PM
Thank you, Lj and Sherrine. I will definitely check out the videos on trigger release. I tend to just suffer through everything rather than get the PT evaluation and treatment that is needed. So glad both of you were helped. Sherrine, I know, I tend to blame everything on the fibro, but sometimes it is something else going on which needs evaluation. At 58, I should check for problems elsewhere such as the back or hip, especially since I have spinal problems and osteoporosis of the hip also. Thanks for raising that possibility; probably best to check it out before assuming it is fibro. The confusing part is that it seems to come and go in flares; if it were hip or sacroiliac, for instance, it would be more constant? (oh my, don't even say it, right?). Interesting that I was reading that pelvic floor dysfunction, which can give rise to these problems, can be due to "central sensitization; i.e. fibromyalgia?? All these problems are surely interconnected. I also get proctalgia fugax, or rectal spasm, which is unbelievably painful, if you've never had that (certainly hope not), so it's probably related. Appreciate your thoughts!

Posted By : Sherrine - 2/19/2017 7:50 AM
Chi's Mom, I suggest you find a good board certified rheumatologist and find out what you are dealing with. It could be absolutely nothing but if there is a problem you can get the correct help.

What sent me to my rheumy was not only the horrible pain going down both legs but also my back pain started getting worse and worse. I always assumed the back pain was caused by fibro, and I'm sure some of it does. But I also know that fibro isn't considered a progressive illness. So out of desperation to help with the dibiliting pain, I found a good rheumatologist. Do make sure they treat fibro patients since there are still doctors out there in the Dark Ages when it comes to fibro. I also like to remind members that 50% of the doctors graduated in the lower half of their class so do your homework when choosing your doctors.

Anyway, after x-rays, blood work, and taking a thorough history of my health and the health of my immediate family, I was diagnosed with ankylosing spondylitis and sacroiliitis. He wanted me to start Remicade infusions but I declined. So I was put back on ibuprofen with food and I asked about a muscle relaxer that I had taken for back pain years ago (Robaxin) and that was prescribed too. I started getting better and better. I now generally only need to take these twice a day...unless I have a flare or do something stupid to cause me more back pain.

It really is worth finding out what is going on. Sacroiliitis is an inflammatory illness so if the inflammation settles down it most likely does get better. I'm not a doctor...just guessing. But I do feel it's important to know what you are dealing with because, as you remembered, not everything is caused by fibromyalgia.

Do let us know what you do because we do care about you.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : chi'smom - 2/19/2017 10:33 AM
Thank you, Sherrine for sharing your story and for the good advice. You are right, of course. So sorry that you were diagnosed with AS, in addition to all the other conditions you are dealing with. It seems once you have arthritis and rheumatic issues, you tend to have other conditions such as fibro as well. Maybe someday they will figure out the links. I actually was evaluated for AS years ago, but doctors disagreed whether I had it; I was seen at the top-rated Cleveland Clinic even. Interested to know at what age (if you don't mind sharing!) and how they diagnosed your AS. I was told it was unlikely because of being female and my HLA-27 was negative. However, now many years later, I am left with a severe stiffness and kyphosis in my spine, which might have been helped if it had been diagnosed and treated. I also deal, however, with cervical stenosis and chronic dizziness/mild dysautonomia issues, so am trying to figure out how all that relates. It is so confusing, but you are so right, finding a good doctor who understands and is willing to piece things together is of the utmost importance. I saw so many doctors in my earlier years that I became discouraged, but I am now encouraged to try to evaluate it further! Take care -

Posted By : Sherrine - 2/19/2017 1:05 PM
Here's my story. I developed fibro two weeks before my 40th birthday...while watching TV with my husband. I had just finished a Prednisone dose pack for an illness I had and I sometimes wonder if that helped kick it in but I have no proof. I was watching TV and my toes started to hurt, then my ankles, then knees, etc. It worked up my body over a 45 minute period and when it hit my elbows it was like I had severely banged both elbows and that horrible "electrical" pain was shooting down both arms...and it never stopped for over two weeks! I couldn't eat, hold things, sleep. I just cried.

I saw my Internist and he tested me and said I had fibrositis. That's what fibromyalgia was called back then...30 years ago. They thought fibro was an inflammation of the muscles, tendons, and ligaments...hence the "itis" at the end of the name. They now know that fibro is not inflammatory and it isn't a rheumatic illness either so the name was changed to fibromyalgia. My Internist told me to take aspirin and sent me on my way.

After two weeks of taking enough aspirin to choke a horse, my ears were ringing badly. I headed back to the Internist and he prescribed ibuprofen for me and I've been using this medication ever since. Ibuprofen was still a prescription drug back then.

The ibuprofen helped get the pain under control, plus I paced myself and walked a little. Remember, personal computers were just coming out then and there was no World Wide Web to turn to. I was on my own. I didn't know a soul who had this...let alone had heard of it.

A few years later I was checked for Lyme disease, since that had recently been discovered, and that was ruled out also. I just learned how to adjust my life so I could do what I needed to do in spite of this illness. I had three children and had to keep moving and that was a huge blessing. Sitting and laying around too much causes more pain and fatigue.

Five years ago I developed a bleeding ulcer from all the ibuprofen I had taken over the years. I was told never to take ibuprofen again and sent home. I was okay for three days and then the pain came back with a vengeance. My back was getting worse and worse and then I started the extreme groin pain that went from the inside of my thighs down to the calves in both legs. Just trying to lift my feet slightly to take a baby step caused pain that nearly passed me out. My daughter was coming over and cleaning for me, I was walking with two canes, and it was so bad that I actually drank minimal water and hardly ate anything so I didn't have to walk to the bathroom. Now THAT'S bad but it shows how much pain I was in.

My Internist had me try Tramadol and, when that didn't help one iota, he prescribed Vicodin. That didn't help either and he didn't know what else to do so he suggested I see a rheumatologist. He gave me two names to choose from that he know were excellent. (My Internist is affiliated with a medical school here in Tampa Bay.)

I really didn't want to add another MD to my growing list but, when it dawned on me that fibro was not a progressive illness but yet my pain was getting worse and worse, I knew I needed to see a rheumy. I made my appointment.

The rheumatologist took many x-rays, took eight viles of blood work, and did an extensive medical history for my files. He also sent me for two MRI's of my hips. When the tests came back, two inflammatory markers (ESR and CRP) were both quite high and the genetic marker for spondyloarthropothy, which is called the HLA-B27, was positive. The diagnosis of ankylosing spondylitis and sacroiliitis were given. He said I most likely have had AS for many years but kept it under control with ibuprofen. I was 65 years old when this diagnosis was finally given. I probably have actually had this for at least 25 years but my taking ibuprofen kept the pain tamped down.

Mind you, fibro is not an inflammatory illness. But I have Crohn's disease, diabetes, auto immune inner ear disease and AS that all are inflammatory illnesses. Because of all the inflammation I experience, he wanted to put me on Remicade infusions. I wouldn't do it. With my family history I didn't think that was a very good idea and my Internist did agree with me on that one! So, my Internist sat me down and we discussed my taking ibuprofen again. He said it was a quality of life issue for me and he said there was a medication that helps prevent ulcers when taking NSAID's. (I did ask the rheumy about taking Robaxin...a muscle relaxer that I had taken several times over the years and he agreed to prescribe it. He prescribed two 500 MG tablets four times a day but I only took one four times a day and it really helped me so much with all my discomfort! I now only take ibuprofen and the muscle relaxer twice a day unless I'm in a flare. The nice thing about this muscle relaxer (the generic name is methocarbomol) is that the pills are scored. If one 500 MG was too much for you, you could cut the pills in half. I have never had any reaction to this medication but some members have. We are all so different as to how our bodies react to medications). So, the bottom line is that I decided to take ibuprofen again along with the Robaxin and here I am, five years later, doing quite well!

I'm glad you are up by the Cleveland Clinic. It's an excellent hospital. I used to live there for 28 years and had my ostomy surgery done there. You will be able to find a great rheumatologist who believes in fibromyalgia. We have a member that I haven't seen recently who moved to the Cleveland area and found a wonderful fibro doctor at the Clinic. You may not have AS but you could have something else that can be easily controlled and you don't have to deal with the extreme pain. It's worth checking out. I don't go to "Dr. Google" and I don't follow things on the Internet, except sites like the Mayo Clinic and other teaching hospitals and the National Institutes of Health, without my doctor knowing. There are a lot of creative writers out there and also people who pass themselves off as experts but how do we know???? I don't take those chances and I'm living successfully with fibromyalgia. I pass everything by him and even my list of medications includes a section listing all the supplements I take...even Tums. LOL I think this is very important too.

So, if it's been a while since you've been checked out, it sure wouldn't hurt to be checked again. You can develop things over the years. I'm the poster child for that. LOL Just make sure all your doctors are really good. Mine are all board certified and most are also diplomates. They have to keep abreast of the new things in medicine and take tests to keep the title of a diplomate...at least that's what my Internist up north told me.

Here is a good link about fibromyalgia by the National Institutes of Health.

/www.niams.nih.gov/health_info/Fibromyalgia/

I hope this has helped you.

Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Post Edited (Sherrine) : 2/19/2017 12:10:20 PM (GMT-7)


Posted By : chi'smom - 2/19/2017 1:34 PM
Thanks, Sherrine, for sharing both your knowledge and experience. I'm sure it will help other members too, to encourage us to check things out. I'm so sorry you have gone through so much. As you noted, your HLA-27 was elevated, which is diagnostic I know for AS. You were in so much pain that it's not surprising your markers were so high. So weird how it all started initially, though; sometimes I think viruses or illnesses do set things in motion, or maybe even the pred, as you mentioned. I'm glad you could continue taking the ibuprofen after they added the other med; that was the first thing I thought of as I was reading your post, your poor stomach! You are right, though, it does become a matter of quality of life versus risk sometimes, doesn't it? Keep the faith; you have certainly been through the fire!

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