Has this happened to anyone else?

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hisfaithful1
Regular Member


Date Joined May 2010
Total Posts : 167
   Posted 6/4/2010 4:50 PM (GMT -7)   
 
 Hey everyone hi,
  
My name's Debbie and this is all very new to me. My MD listened to all of my symptoms which include terrible fatigue, all over achiness which is way worse at times than others. Not feeling like I slept too well, and sometimes having to go back to bed for several hours, muscle twitching, lower back pain, nauesa and headaches also off and on, there's more but I can't think of them all right now...  oh yeah, trouble remembering and concentrating!! It's almost as bad as the fatigue, hate it!
 I would get so tired after working only a part time job, would have to nap, and ached soo bad.
 
Well I kinda thought I may have Chronic Fatigue. She said she thought it was Fibro.  Then she did the pressure point test on me, and it only hurt in maybe like 6 or 7 places, although she did not touch my head or chest? I looked up the test when I got home.    Sorry this is so long, but I am confused.. I have many of the symptoms of Fibromyalgia. She didn't say anything about the test either, but told me I can try Savella, and gave me samples of it. I'm already on Tramadol for back pain. Some of the pain is from L3 & L4 bulged disks.
 
For diagnosis she had put Fibromyalgia, then crossed it out and put Fatigue.  (didn't notice this till I got home)     She also then told me I can have a bunch of tests to rule out other illnesses.So I'm wondering has anyone else here had a similar experience? When I self tested it hurt in alot more places? Maybe I pushed too hard, I do not know. I only know this is miserable,  and it would be nice to know for sure what it is? I would be grateful for any opinions or thoughts.
 
Thanks, and again sorry for the long first post!
 
God bless to you all
        Debbie 

sotiredoffibro
Veteran Member


Date Joined May 2010
Total Posts : 1556
   Posted 6/4/2010 4:59 PM (GMT -7)   
Hi debbie and welcome. Sorry your having so much pain. One of the things you might want to do is set up an appt. with a rheumatologist. They usually have more experience with the tender points than a regualar GP. Im not saying you have fibro but there has to be something wrong and a rheumatologist might be able to find out what it is faster. I hope this helps.

Shirley

SadSickTired
Regular Member


Date Joined May 2009
Total Posts : 99
   Posted 6/5/2010 1:59 AM (GMT -7)   
Debbie,
Let me tell ya girl! Not only has this happened to me, it has happened to alot, if not most of us! Because Fibro is not one of these diseases that is dx'd by a test or series of tests that can be taken and then the doctor reads it and says "Yes you have Fibromyalgia and here is the treatment... many times doctors need to find out what it isn't first. The pressure point test or pain point test that you described is usually an 18 point test made up of 4 different quadrants of the body. Most doctors will recommend a rheumatologist to get a dx of fibro. I live in Illinois near Chicago and I was told by two separate Rheumies that Fibromites get sent to rheumies a lot of times simply because it is thought to be a joint / muscle issue because that's where the pain feels like it comes from- its a very generalized grouping. In reality, rheumies have very little expertise (rheumatologists don't do a lot of training in fibromyalgia beyond a general part of their education) in the treatment of Fibro unless it is an area they specialize in since it is not an actual debilitation of the joints or muscles. So finding a GOOD Rheumie is key. If you can find one that is knowledgeable about Fibro that is great. But don't just limit yourself to a Rheumatologist for Fibro care. If you don't have or can't find a good Rheumatolgist in your area that can give you the type of care that need and deserve look beyond the area and type. You can use a Pain Mgt doctor or also a GP or Family Doctor that has treated Fibro successfully. The main point is that you are comfortable with your doctor, the treatment plan that you are on, and how you are feeling at any given time. If it is Fibro you may or may not have a long road ahead of you if its mild or severe. Either way you will have a lot of questions and need to have a good relationship with whoever you choose to provide care for you. Just like any life changing journey- the partner you choose to take with will make all the difference. And beware of anyone who tells you that they can CURE you- there is NO cure for Fibromyalgia. I have been to two different rheumies, two pain mgt doctors (working on finding a third as of today) and I have a great family doctor that has been with me throughout the whole process keeping me in stock with referrals. My pain mgt doctor today told me that he was out of ideas (actually his actual words were, "Gosh Trish I'm all out of bullets for you.") . So if I still have pain and he is all out of ideas then I do what? I find a new doctor, because at 36 I am not ready to give up. You might have a long battle ahead but never stop pushing. And don't take no for an answer. I hope it helps!
Dx'd: TMJ-1997; High Blood Pressure- 2007; Fibromyalgia- 2008; Raynaud's- 2008;

Medications- Who can keep up? If its out there for what I have or might work to prevent pain for what I have then I have tried it. But actual pain relievers- not so easy to get in the Land of the Free.


vestabula
Veteran Member


Date Joined Nov 2008
Total Posts : 2855
   Posted 6/5/2010 5:27 AM (GMT -7)   

JP...we don't use this forum to scare people.  Most of us (if not all) have had muscle twitching, spasms and other related symptoms with this disease and to my knowledge have never had seizures from it.  We are here to comfort each other...don't need to read a blog about the hazzards of stress that is frightening.

Debbie...like others have suggested, find a good rheumy that has a 'clue', get your testing done to rule out other diseases and know that you can always come here for support.  We care and we share!  And we laugh a lot because it's good for the soul!

Huggies

Donna


fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: valium Advil

Post Edited (vestabula) : 6/5/2010 6:56:20 AM (GMT-6)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 6/5/2010 7:54 AM (GMT -7)   
Hi, Debbie, and welcome!  I'm so glad you found us and joined in  We have wonderful members who love to help one another and really do care about one another, too.
 
I'm not a doctor but you sure sound like you have fibro.  We have bad fatigue, too.  Also, some doctors are starting to think that fibro and chronic fatigue are the same thing.  They don't know what causes fibro and there really isn't a test for it, either.  Doctors usually run a myriad of tests to rule out other illnesses first before giving the diagnosis of fibro.  Fibro shares many of the same symptoms as other illnesses so that's why they do that. 
 
The tender point test is given and some doctors think you need a specific amount of tender spots to rule your illness as fibro.  When they checked me, I didn't had all of the tender points I should, but I was also taking ibuprofen and extra strength Tylenol and that has to play into it.  You are taking Tramadol so that might be why you were only tender for a few points.  Also, I read a few months ago that now some doctors don't think you need as many tender points for a diagnosis.  You know how medicine goes...especially if the doctors don't REALLY understand the illness.
 
Keep in mind, I'm only guessing but it sounds logical to me!  turn
 
I use a board certified Internist for my fibro.  They have more education than a General Practioner.  Many use rheumatologists for their fibro.  But, if your doctor has given you tests and now is having you try Savella, it sounds like they do understand fibro some.  At least they didn't say it was all in your head!
 
Nevertheless, you are having pain, fatigue, fibro fog, muscle twitches, so, as far as I'm concerned, you came to the right place!  We all have that stuff here and are learning how to control the pain, get better rest, laugh at the fog, and ignore the twitches. 
 
Be sure to check out Fibro 101...the second thread on the forum.  There are links to good information about fibro and you will learn a lot there.  Be sure to check out the links called List of Symptoms and What Else Could It Be. 
 
I'm happy you joined our family!  Don't hesitate to ask questions because we are here to help you.  I hope to hear more from you soon.
 
Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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) : 6/5/2010 8:59:06 AM (GMT-6)


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 6/5/2010 8:06 AM (GMT -7)   
Hi Debbie, You have already been given some wonderful advice. I just wanted to also
welcome you to our fibro family. You will find many caring and understanding fibromites
who are here to share and offer wonderful support. Glad you have joined us!!!

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 


KellieJo
Regular Member


Date Joined Apr 2010
Total Posts : 382
   Posted 6/5/2010 8:12 AM (GMT -7)   
Welcome Debbie.....hope you find the answers. I know being undiagnosed and trying to explain to the doctor what is happening is hard.

The people here are wonderful and it helps you to understand that you are not the only one going through this.

WhiteChocChip
Regular Member


Date Joined Jun 2009
Total Posts : 439
   Posted 6/5/2010 8:36 AM (GMT -7)   
The doctor will send you for a ton of tests before diagnosing you with Fibro. They want to make sure that absolutely nothing else is causing your issues.

hisfaithful1
Regular Member


Date Joined May 2010
Total Posts : 167
   Posted 6/5/2010 9:02 AM (GMT -7)   
Thank you everyone who replied. I am sitting here nearly in tears...  I do not know any of you, yet your responses meant sooo much.
 
Yesterday even though i awoke with a headache the achiness and even the fatigue wasn't as bad as usual. Today is another story. It's back,  and a shakiness that is really annoying! On the days that aren't so bad I find myself wondering if it's all in my head!! confused Then the bad days always come back... and I'm like...  there's no way this could not be real. It's too miserable.
 
 
 
Donna, I agree whole heartedly about laughter;  it is so very good for the soul,  and probably for our physical well being too. At least it helps. I just read the post about forgetting to turn the stove off and such, and sorry, can't remember who started it, and am just too tired to go back and check, but it did give me a good laugh, and so did the responses!  I have done so many things like that it's not even funny!  Well sometimes it is...   sometimes it's embarresing.
 
Trish, It sounds like you deal with alot of pain. I am so sorry to hear that. Thank you  much for the good info.
Do you think it is okay to get all the tests to rule other illnesses thru my MD ? Gee , now that I think about it, I will have to, as I'm only covered there at a clinic where you pay on a sliding scale. I hate it when I can't think straight!!!!  If I do go to a specialist, like a Rheumy, I'm on my own payment wise, well, me and my husband. I'm not working and Jim my hubby is on disability, but can still work part time.     We thank God for that, otherwise we wouldn't make it. Thankfully Jim has coverage thru the VA for himself.   Again thank you very much for the encouragement!! It helps more than I can say.
 
Shirley, thank you for the welcome, and advice. I wish I could just go to a Rheumy, but like I mentioned above it will have to wait awile. One good thing about my Dr.  is she does seem to recognize Fibro as a real illness, she even told me she treats others with it,  and that the Savella was helping several of them.  Ohhh boy though, did I ever feel so nauseus yesterday when the dose went up to 50 miligrams. The worse I've had in years!! And I did take it after I ate.  Last nite and  this morning I was too scared to take 50 mgs again so I only took 25. So far no nausea. But still feel awful.
 
 Do any of you have the achiness? to me it feels like the flu. Sometimes it subsides after I've been up awhile, but the fatigue is always there. My joints ache, but not always, except my hips,  and I have pretty bad osteoarthritis in them. I have to turn over alot at nite because of the pain. And something that just started a few weeks ago is pain in my fingers, feels stiff and achy like arthritis, but no swelling? My Dr. did already test me for RA, and it came out negative. So do any of you  know if this is a symptom of Fibro?  I have read alot about Fibro the past several weeks, but I can't retain awhole lot. I hate that!!
 I have to go back and reread alot. At least I love to read !!
 
JP, Sorry I wasn't able to go to your story.  But, thank you for reaching out. 
 
Again thank you everyone for the kind welcome and advice. I think I'm going to like it here. You each helped make my morning a little brighter. Hopefully I can do the same for you as well. My heart goes out to you all, from what I've already read on here some of you really have so much pain and suffering, but you are somehow able to keep your chins up, also the support here I'm sure helps tremendously. Looking forward to gettin to know you all.
 
I CAN do all things through Him who strengthens me!! John 14:6 
 
Blessings, Debbie 

KellieJo
Regular Member


Date Joined Apr 2010
Total Posts : 382
   Posted 6/5/2010 9:16 AM (GMT -7)   
Today is the day I feel like I worked out but didn't feeling.....

For me prayer and talking to the Lord has help me through this, plus talking with others in the same sitituation, at least I know they are feeling the same things I do.

hisfaithful1
Regular Member


Date Joined May 2010
Total Posts : 167
   Posted 6/5/2010 4:34 PM (GMT -7)   
    I want to thank the rest of you ladies who responded.
Thanks for the welcome and kind words.
 
I too feel crudy today KellieJo, I'm starting to see a pattern in all this...  which is..  you never know how your going to feel from one day to the next! Seriously, if I didn't have my faith in the Lord I know I wouldn't make it too well. With Him I know I will make it no matter what comes my way, it's in His strength, not my own.
 
I hope tomorrow is a better day for you, and all of us who are struggling.
 
crazykitty, I like your user name. Probably because I love cats! And yes, I believe I have found a nice support group. People who really seem to care, from what all I've read.
 
WhiteChocChip, Thanks, and yes, my Dr. did say if we want to know for sure, there's going to be alot of tests.From what I've read lately here and other places online, I'm pretty fortunate to have a MD that doesn't shurg this off.
 
Sherrine,  I am really grateful to you for taking the time to explain so much to me. What you said about the tender point test makes so much sense. The Tramadol probably helps about 30 or 40 %, so it could have made a difference.
 
I will check out the Fibro 101, and anything else I can. When something is going on I like to find out all I can.
My MD.  did do some testing, she actually called me at night to tell me a had Chronic Kidney Disease, 3rd. stage. That was a stunner!!  Thankfully further testing showed its only stage 2, which is not so bad, and if you take care of yourself you can stay in stage 2 and maybe even 3 for a long time. None of my current symptoms are from that as you usually do not get symptomatic till stage 4 or 5. 5 being time for dialysis or transplant.  I was really relieved!  Now this!! I'm 54 and have always been pretty healthy. Thats why I know something is not right.
 
I have found out about the bulged disks, osteoarthritis in hips,   and usually they are not this bad in someone my age, she said I will need a hip transplant sooner or later, and the Chronic Kidney Disease, and the possible Fibro all in only the past 3 months.     sad
 
Anyway, thanks again soo much. It's a relief to know you are all here.        :-)  
 
Blessings, Debbie  
 
 

debbiea
New Member


Date Joined Jun 2010
Total Posts : 6
   Posted 6/7/2010 12:56 AM (GMT -7)   
hey debbie I know what you are saying I went to doc who sent me to rhuematogist and he did the tender point test and said you may have fibromyalgia went back to my doc gp and he said it may fibro rhuematoligist put me on endep and my gp gave me painkiller over counter type you feel like you are beening looked at as a nutter and people around you seem to think because you are not showing sign of being sick to them that its all in your head I am in pain all the time and trying to look for cures but I do believe we can get this horribale illness under control and this web site has been great hope you feel better soon

Sheila1366
Regular Member


Date Joined Aug 2005
Total Posts : 384
   Posted 6/7/2010 2:01 AM (GMT -7)   

Sorry you are having such a hard time. FM/CFS is a tough illness to deal with. Maybe you can call the dr. back and confirm the diagnoses. Seeing a reheum. is a good idea. That is who diagnosed me. She did run a few tests to rule out lupus and ra. Better to check these things out to be safe.

I hope that the medication helps. Try to rest when you can.

Keep us posted.


I struggle with FM,Raynauds Syndrome,gastroparesis, IBS and depression. I trust in God with all things. Been a tough journey and it's not getting any easier but thanks to God and my family I am not alone.

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