Depressed, hopeless, and in search of answers
beachlover - Apr 23rd, 2009 9:43 PM
[ Original Post ]

Hi all. I have Rheumatoid Arthritiis and Fibromyalgia. I have had RA for 15 years and Fibro for 10. Up until January I was working full-time, had an active social, went to the gym regulary etc. Both conditions were somewhat under oontrol. I was just tired all the time from the lack of sleep due to fibro. Since January I have been ill and battling severe symptoms. I have been unable to work and do what I used to do. It started with severe ongoing headaches, blurry vision, dizziness, and nausea. All throughout January and February. Saw a Neurolgist in begining of Feb. who said that I was having ongoing Migraines so he gave me Elavil for the Migraines. Had 2 MRI's done at the time which came back normal. Heaaches started to decrease. Towards end of Feb. I started having non-stop dizziness. I feel like my head is spinning 24/7. Neuro said that Elavil was helping the headaches but not the dizziness so he gave me new medicine. (Xanax)which was supposed to help both. The dizziness never went away. In begginning of March the vision changed from blurry, do double and distorted vision. Still having the same vision problems. Neuro ordered another MRI in March bec. I was having new symtoms that were not there before. Also had spinal tap done, and blood work for various conditions. All tests have come back normal. I have also been having rib and chest pains along with burning sensation that radiates throughout body. More in the head though. Neuro has no answers for me bec. all tests have come back normal. He has suspected MS or another rare neurological condition but all tests have come back normal for both conditions. Until I found this site I had no idea that fibro can cause many of the symptoms that I have been having. Has anyone experienced any of these symptoms before? A friend who also has fibro said that these symptoms would not be persistent if they were related to fibro.I am only on celebrex for my RA. Docs do not want to prescribe any other meds because of my symtoms and not knowing what is going on with me. I am at the end of my rope and just want my life back. I hope I do not sound crazy when I say that my head is spinning 24/7. The only time I do not feel the vertigo is when I am in motion. Also a lot of muscle pain and weakness which is typical fibro. Any input would be appreciated. Thank you. The only reason I am still here is bec. of my God. I pray and trust that he will heal me one day in his timing not mine.

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beachlover - Apr 23rd, 2009 10:09 PM

one more thing to add to my last post. I also have difficulty breathing at times. I have never felt so ill before. The vision problem really has me worried. I have not been able to drive since January so I depend on people for rides. Not fun. Head spinning all of the time has been very bothersome too. Very hard to get out of bed and the house these days. I have never been to so many doctors or had so many tests done in a matter of 4 months. Sorry if post was too long.


axxie - Apr 23rd, 2009 10:30 PM

Dear beachlover, wow I admire you, being able to work for so long with Rheumatoid Arthritis and Fibromyalgia.

So your neuro won't prescribe anything else because they don't know what's going on. Wow it could be anything, since your were talking about frequent tension or migraine headaches, the cause could be the trigger points, it can be tension, allergy, hormones, or other stressors that have initiated or activated the TrPs, in can be extrinsic eye muscles.

So you experience dizziness when you turn your head or move, the sternocleidmastoid trigger point again, cause so much misery, mostly because they are allowed to. Doctors must become familiar with their proprioceptor effects. Otherwise, the doctors may suspect neurologial or psychiatric dysfunction.

Trigger points in this group of muscles can make heading into traffic while driving miserable; you try to look both ways while holding your head in your hands to avoid dizziness, or you can be stooping over to change the cat littler and, when you stand up, you can tumble right over backwards, if you have these TrPs, it is very important to keep your neck warm and away from drafts. The TrPs are active, it is a wise precaution to have with you all the time a scarf around your neck. I have had a scarf for some years, first it was to take away the drafts from the cold weather, then it was because I became attached to the damn thing, and now I use it all the time, because like you I get the same thing, and since wearing my scarf and having more sleep I have been better at not triggering those trigger points around my neck. Now if you must drive, then have a tripple-folded hand towel pinned loosely around your neck as a splint or chin rest before you drive or ride over bumpy roads, so not to aggravate the trigger points.
That and plenty of sleep should help you in a few weeks time, and when you get better make sure you don't stop wearing the scarf, one day you'll be walking into a store with cold relief air that will hit you back at the same spot and wammo, you got it again.

Ask your doctor to give you some muscle relaxer, take it for as long as you need it and get some good rest.


beachlover - Apr 24th, 2009 12:41 AM

Thank you for your input. I experience the dizziness even without turning my head or moving. Just sitting still or lying down my head is spinning around. What where you refering to when you mentioned extrinsic eye muscles? Are you saying that the trigger point in my neck could be causing the non-stop dizziness?


belle1329 - Apr 24th, 2009 10:01 AM

HI Beachlover, and Axxie please see the end of my thread :-)

Are you on anything else for your RA/Fibro?
Your symptoms sound like the side effects of the drug I was just put on for boneloss,Boniva, the vertigo and difficulty breathing. I discovered a web site that people gave the same symptoms. I just started it this month and into the 2nd day I had the difficulty breathing and chest pain, and my vision seems worse. ( it was with the Fibro).Im not sure if Ill take it next month, although I am feeling better today :-). But after looking at that website and all the people complaining of the side effects Im afraid to. Some say they had side effects a month later some said 2 and some say 6mths into it still have even after discontinuing it. Im sorry, Im now rambling on, but this has been my nightmare for the past few days and felt It may be some help to you.
I hope this is some help to you , not that its good news but may be an explanation, then again if your not taking it is useless to you. It just sounded so familiar to me I had to respond.
Good Luck :-)
Ps tried to send the web page but this site said it was not allowed,
Axxie that is what must have happened the other day when I clicked post and it did not show up, I had a url on it. :-) Im not so foggy after all.
I am at work so I do not use MSN (cant) I can put it on at home but can talk more on my free time at work. I go on now because when I get home Im pooped!



beachlover - Apr 24th, 2009 2:23 PM

Hi axxie. Thank you. It has not been easy working all these years with two severe chronic conditions but I really have not had a choice. I can not afford to live off of SSI. They barely give you any money to live off of. My body feels like it is shutting down on me now. Maybe it is telling me that my working days are over.


beachlover - Apr 24th, 2009 2:33 PM

Hi belle. Thank you for your input. Unfortunately my symptoms are not related to that medication that you are talking about because I have never been on it. That is what sucks about medicine. You take medicine to help a medical condition that you may have and then you have to deal with all of the side effects on top of the condition that you can get from the medicine. Some of them being serious. Wow,that medicine does not sound so good. Unless it is really helping you,maybe you should stop it if you are having those side effects from it. I am only on Celebrex now but I was on Enbrel for many years for my RA up until February. My doctor told me to stay off of it for now because of all of the serious problems that I am having. I am still wondering if the problems that I am having now are in any way connected to the Enbrel. I think you can be on a medicine for many years and then still develop problems from it right?


belle1329 - Apr 24th, 2009 3:03 PM

hi
beachlover

Do a google search and put in enbrel side effects it brings you to the same webpage where they discuss enbrel instead of boniva, after the search comes up choose the one that says askapatient com, this site will not allow me to put in the address.


axxie - Apr 24th, 2009 7:03 PM

Hey Beachlover and Belle, after all maybe it is Enbrel that is doing this to you. Ask your doctor to rule out earache and sinus infection.

As you know Enbrel does reduce your auto immune system and it can very well be an infection. I know when my sinuses are infected sometimes I get the dizzy feeling and it can be real bad.

The only other time I have had something remotely the same as you, they never where able to explain, it took a better part of few months before it completely stopped by itself.

I'm sorry that you are feeling like this, it does not sound what I wrote about.

Sandra


Razzilou - May 14th, 2009 11:54 PM

Beachlover ~ How terrible for you! I've never heard of the kind of persistent debilitating vertigo you describe being part of FM ~ it seems really critical that you keep exploring this with a Neuro. My 30 yr. old daughter had a very similar episode lasting several months - and we did everything MRI's, blood work, cardio, EENT, spinal tap, tilt table test ~ and they finally threw their hands up and guessed ~ CFIDS, they think. It's in complete remission now - whatever it is ~ it just stopped over a period of a couple of weeks.

I'm guessing you've probably also seen an Opthamologist to get a complete evaluation of your vision problems . . . if not, I'd definitely do that.

Good luck to you ~ don't let them just push you away because they haven't figured it out yet ~ we were ready to take our daughter to the Mayo or Stanford if she hadn't gotten better.

Take care . . . Razzilou