More frustration and yet another specialist!!

[barefooted]

After being in so much pain I could not even get to the doctor for several weeks (it is over an hour's drive), I finally was able to get there last week.  I only saw the doctor for a very few minutes, in which the conversation went so fast that I had difficulty keeping up or asking questions I needed answers to.  Basically the only thing that happened was a referral to a Neurologist and blood drawn for more tests.  However, I don't think the tests included more than the usual things she tests for.  My flare this time was the worst that I have ever had and involved the major nerve down my entire right leg.  After a week of pain that kept me in constant tears and literal screams, and grew worse daily, I finally got Tramadol from the doctor by phone, and that made a big difference, but it took another couple of weeks before the "burning-freezing" part of the pain left and the usual aches and pains remained.  It left me feeling very weak; however, and I had a bad fall outside when that right leg just turned to jello.  So then it took another week in pain from that fall to get to that Rheumatologist appointment.

My major frustration is the lack of information and conversation with most any of the doctors....especially the Rheumatologists.  I have even been to one of the major medical universities in the south and got no more information than I have gotten any place else.  When I was given the Fibro diagnosis last year, that is all I was given...just the diagnosis...the words with little information involved.  My odyssey started 10 years ago with an autoimmune blood disorder (ITP) and at that time it was the same ....a diagnosis with no real information given. Very few people even know what it is...including those in the medical field.  I think I would have lost my mind had I not had the internet to do my own research and hear what others are going through also.  I had no idea what to expect then and it has been the same with each diagnosis I have been given.  I really feel that the doctors just look at a patient who's body has just turned against them, and they really don't have answers so they say as little as possible.  One of the hardest things for me is understanding the progression of each disease and which things are going to come and go with flares and which are just going to continue to get worse over time.  I need to be able to plan my life and I always want the most knowledge possible so that I'll know what I'm dealing with.  I'm not sure all doctors see it that way.  But this last flare has really frightened me and I may need to change my location in order to live closer to my major doctors.  At present I am living in a rural area that is an hour from a city large enough to have specialists that I need.  But trying to find the answers is difficult.  And I hate the fact that I have to add another Specialist to my list ....I'm afraid I've become fairly cynical about going to anyone because I let myself hope that someone will give me some time and conversation and possibly some answers about my life..and it doesn't happen.  Also, most of the doctors seem to be rather nervous about the blood disease and just sort of shut down there....it's hard to explain, but I've experienced it a great deal and from many doctors.

I would probably advise anyone else to keep trying to find doctors who have time to listen and care...and I have actually done that with most of mine....however this is the 3rd Rheumatologist I've seen in 10 years and two of them I've given up on at times and then gone back again.  I keep hoping there is really a Rheumy out there who actually says something when they speak.  I have come to the conclusion that so little is known about all this autoimmunity and pain that the doctors don't really even understand it and therefore have nothing they can actually tell us about ourselves.

I know that many or most of you have some of these same experiences and years of frustration trying to get and/or understand each diagnosis.  I appreciate this forum and thank you for letting me vent !!  I usually handle things fairly well, but today is just a frustrating day.  I actually have realized that I get more frustrated when I'm coming out of a flare and feeling better.  When I'm in the middle of one, all that my energy can go to is fighting pain.  And when I'm feeling better I start trying to figure out how in the world to catch up on weeks and weeks of all things that didn't get done....that is overwhelming in itself....and then wondering what I can start putting into the future as far as plans go.  Most plans get shot down so often, I get so tired of having to say "I'm sorry, but I can't"....it can become quite self-defeating.  My blood disorder is actually the most serious thing that I have as far as in level of seriousness of what I could possibly die from ...so it affects the length of my life possibly more than other things, but everything else affects the quality of my life more and constant pain doesn't  leave much room for quality.  It just wears me down!!

Okay...I'll stop now, because I do know that you all understand and that in itself has helped me today.

Appreciatively your,
barefooted

[barefooted]

Thank you for your response to my post.  I do know that I'm not alone since I've found this forum and it helps greatly.  

I am fascinated by the shallow breathing aspect of Fibro.  I've not heard that before.  Please keep me/us posted on your test results and progress with this doctor and his treatment of your condition.  It certainly sounds like he may know everything that is available to know about this disorder.  

Good luck!

[Phtartist]

You are not alone. Frustration is part of this illness.  I just went to one of the top specialists in the FM field, a teacher in one of John's Hopkins teaching hospitals, a voice on NBC, and a writer of FM criteria who is involved in many organizations of FM.  

He was very thorough, but the only hands on that he did was the trigger point test.  
I did have to print out and fill in a 21 page questionere plus send in the report of every test (mri, ct, x-ray, mammogram) up to date, and blood tests recently taken. This plus the questionere and the interview and a ventilation test is where he is starting.  
He may have seemed to be vague but he is so experienced that he connects dots that I don't see.  He put me on Sam-E a natural antidepressant that works on pain, and upped the Baclofen I'm on which is a muscle relaxer that MS patients take that is now being used for FM patients.  It works immediately on my neurological pain, such as you are suffering from.  

There is an interesting thing with FM people it seems. We shallow breath not using our diaphram. This lessens oxygen from helping the elasticity of our blood vessels and muscles.  

This was my first visit, I have to have breathing therapy, physical therapy to work on my daily headaches, (which he never checked my ear or sinus for) and he is seeing me in a month to see where we go from there.

I was not completely satisfied, my issues were not addressed, such as, why do viral symptoms rise so severely and for so long when I get stressed physically and psychologically.  Then again, he did ask me if I had any more questions. THIS IS MORE THAN YOUR DR.'S HAVE DONE FOR YOU.

This Dr. knows his stuff, he will follow through and deduce what needs to happen next to get me functioning.
I like you were completely disabled recently. I completely missed the Holidays except for my children stopping by and being with my husband and dogs.  Otherwise I was bedridden.

You are not alone.

[patsy10]

Thanks for responding.  It sounds similar to what I am going through.  I feel it in my spine, neck, arms and legs.  It feels  numb, tingly, buring like fire.  In all my muscles too.  It runs down my leg to my foot.  It's in many areas.  My muscles are twitching like crazy all over.  The pain is really bad.  I'm not sure what it is but it seems like a lot more than just fibro to me.

I enjoyed reading your post.  I can't believe you had the energy to write it!  LOL!

[barefooted]

This pain started with electrical shocks in lower spine and then severe electrical pain moved to right hip, down to right knee, then calf and into ankle.  It felt as if someone had set a blazing fire to my leg and then attempted to put dry ice on it.  It was all painful and yet numb at the same time...and hot and cold at the same time.  It was a pain like shingles...if you've ever had that...yet it was worse than the shingles had ever been because it was also in the muscles it seemed.  For over a week the pain hurt from the spine to the ankle and only the tramadol made it ease up a little.  After a week or so on the Tramadol, it began to stop with the nerve pain and just went back to the usual pain and aches in my skin, muscle, tissue and bone.  

That's about the best I can describe it. I hope this makes sense. Thanks for reading my first post...I feel apologetic that I got so carried away and wrote so much!!

[patsy10]

Can you tell me what areas you feel all the pain and burning in addition to what you described above?  I'm having a huge flare of lyme or whatever I have and trying to figure out what's going on.  Thanks.