Really confused

[Ginnylee78]

Hi! I was recently diagnosed with Fibromyalgia and I'm just not sure about it. I figured I would seek out advice from people with experience and that's why I'm here. This is going to be very long and I apologize. I will appreciate anyone that takes the time to read it!

A little bit about me - I'm a 43-year-old mother of three (ages 19, 14 and 9).

I was diagnosed with mild Psoriasis in June 2007. By September 2007, I began having symptoms of Psoriatic Arthritis. By winter 2007/2008, it seemed to be all over me. My main symptoms were joint pain and major fatigue. I have verified joint damage (by x-rays/MRIs at various times) in my hands, my hips and my spine. I had a discectomy with fusion at levels C5-6 and C6-7 in October 2012. My neck issues were labeled as degenerative disc disease (osteoarthritis) and I have bulging discs in my lumbar area with arthritis showing on the facet joints. I have visible damage in my toes (you can see the deformities without and x-ray) and I'm suspecting damage in my knees, elbows and shoulders. They just haven't been imaged yet.

My psoriasis patches have appeared on my elbows, my knees and my feet. Right now, I only have a small patch on my right knee. I'm very thankful my skin issues have always been mild.

I have been on several treatments since my PsA diagnosis, including Mobic, Ibuprofen, Methotrexate, Plaquenil, Remicade, Orencia, Stelara and I'm currently on Enbrel. I had the most relief while I was taking Remicade infusions, but it eventually stopped working, as is common with the biologics. Stelara completely cleared my skin, but did nothing for my joints. Enbrel has worked for a couple of years, but may be starting to decrease in effectiveness.

I was also diagnosed with asthma at 19 and told that I have a harmless heart issue (it skips a beat every now and then).

That brings me to now. A couple of years ago, I started having some issues with my eye sight. I have normal 40-something eyesight. I use reading glasses for small print, but can see fine otherwise. The first strange thing that I noticed is that everything seems to be a bit darker. It's sort of like there is a grey filter on my eyes. It doesn't interfere with my sight, it just darkens everything a tiny bit. Then there are days when I can't see anything at all. Everything is a massive blur. I mentioned this to my eye doc and I tested just fine the day I was there. He told me I had dry eye that is typical of someone with arthritis.

I started having a lot of pain around my ribs. I figured this was just arthritis, but the pain is different. It almost makes me feel queasy. I almost feel like someone is squeezing my torso. My spine feels sore up and down the entire length.

A few weeks ago I my husband was driving and I was in the passenger seat. I simply picked up my right arm that had been resting in my lap and moved it to the arm rest. I didn't move in an odd way or do anything unusual, but I suddenly felt like I had been shot underneath my bicep. The pain slowly radiated into my armpit and down my ribs. It was the type of pain that will take your breath. I had never felt anything like it. I described it as being shot or hit by a bolt of lightning. The pain eased slowly over the next couple of hours and there is still some residual soreness I feel at times. A week or two later, I had the exact same thing happen on the other side. This time I was simply turning over in the bed. Again, not a strange or awkward movement.

My face and my arms and hands have a mild tingling or numbness. It's not extreme, just enough for me to feel it.

My hand spasmed one day recently and my thumb involuntarily pressed itself deeply into palm. It was extremely painful and I could not move it for several minutes.

My left eye is twitching off and on all the time now. Just today, my lip started twitching.

My arms (especially my left) don't exactly seem to be responding to what my brain is telling them to do. They seem to swing out a bit and typing is getting to be harder and harder. (Yes, this is taking me a very long time to type!)

The fatigue is insane. I cannot leave my house other than to pick my kids up from school. If I do very much at all, I must sleep. Fatigue is a normal issue with psoriatic arthritis, but this is over the top compared to anything I've ever experienced.

I called my rheumatologist a few weeks ago because of these new symptoms and they worked me in. (The rheum that diagnosed me passed away and I've been seeing a new group since August 2015.) I actually see a nurse practitioner in the group. She's wonderful. She listened to all of my complaints and said she thought they might be neurological. She went ahead and ran several tests to rule out (once again) other autoimmune diseases and asked me to come back in two weeks to discuss those results and that she would probably refer me to a neurologist and possibly order some new imaging to be done.

Not surprisingly, all of my blood work came back normal except for my vitamin D. It's usually low. She said she wanted to discuss the results with one of the rheumatologists in the group before she made her final recommendations to make sure they were in line with what they would do. She came back in the room with a doctor. The rheum did not look at the older info in my chart and only read my current info. I'll make an even longer story shorter and just say that she was ready to take away my psoriatic arthritis diagnosis (without paying attention the obvious and verified damage) and wanted to stop my Enbrel. She said I had Fibromyalgia and that I needed to start taking Cymbalta.

Needless to say, I panicked. I asked her what about the damage I already had and she looked stunned. She started mashing on me trying to find pressure points. I didn't have any. She looked puzzled and said she needed to consult with the NP and they left the room. The NP came back alone (with a stressed look on her face) and said I could stay on my Enbrel and that I needed to up my vitamin D and take Cymbalta and come back in six weeks. I was so dumbfounded that I didn't know what to say.

So, my mind has been swirling since. I most certainly have psoriatic arthritis and can't believe she went down that road. Yes, I have some symptoms of Fibromyalgia, but they seem to be the ones that are in common with several other issues! And I have no pressure points.

I decided against starting the Cymbalta after reading about it. It doesn't seem like the kind of drug someone should be taking if they are uncertain about their diagnosis. I called and left a message for the nurse practitioner.

I really don't know what to do at this point. Does anyone have any advice for me? Does it sound like I have Fibromyalgia?

Thanks so much for reading this. I'm just really stressed and don't know where to turn.

 

[diamond]

Gosh yours is a long and confusing story...I am not surprised you are stressed.

The thing with fibromyalgia is it could cause all of your symptoms. In my experience it knows no bounds for the types of pain...where or how long it lasts.

Some of us have areas that permanently hurt and other areas where is changes and comes and goes or at least is less painful some days if not gone all together.

Throw into that mix that activity stress and for some, weather changes can influence pain levels..we also get.. tingling burning stiffness and locking up in muscles tendons ligaments and joints.

I also get numbness and feeling like my brain is disconnected from my limbs and messages to tell them what to do don't get through...as if i can't make my arms work both through fatigue and kind of numb brain signals.

It would be wrong for me to speculate on your diagnosis but maybe you could write down bullet points of concerns and symptoms that you feel are not being addressed ready for your next appointment.

I do have all the tender points and pressing them literally makes me yelp but i think some other people find they come and go.

It was used as the gold standard for diagnosing fibro but i gather it is no longer the case which makes it even more confusing.

I hope some other people have some good advice for you...I am a bit foggy today....but wanted to say welcome.

If all else fails ask to see another rheumy who can take a look at all your results and start again with fresh eyes.

You need to be happy before you start taking too many strong meds at once that they are necessary and i totally understand why you would be hesitant to take Cymbalta.....we are not guinee pigs and sometimes when doctors are baffled they start prescribing drugs and if they help that helps them confirm a diagnosis.


Good Luck

 

[remnant]

Quite a mouthful. You are struggling with a host of conditions and treatments and it seems that things are not really working out. Have you tried to detox? The first thing to do is a detoxification programme to cleanse your body systems coupled with alternative treatment options like natural supplements and walking exercises. I would also advise you to see a GP for a thorough medical check up and follow up if possible with al medical counsellor. They may refer you to a specialist. For now, exercise and drink plenty of water and take fermented liquids like yoghurt to replenish your gut. Above all, maintain am optimistic outlook to avoid stress.

 

[Forgetmenot]

Have u been tested for ms .just with the eye thing and the hugs around your ribs it might be worth asking your dr about it.pls don't panic I'm not saying u have but do ask.
Now in saying that I always thought I had ms , but turned out to be Fibro.and I don't have pressure points. Pressure point test is alittle outdated now.
There many of us who don't have them all the time. Some come some go.
I'd never be surprised if u do have Fibro.and your welcome to hang around here with us until u no.were a bit nuts but we don't bite X

 

[Ginnylee78]

Thank you all for your replies! I'm glad everyone else is as baffled as I am! My brain is pretty much scrambled eggs right now and my vision is a mess. I will come back when things clear a bit, but for now I wanted to let you know that I appreciate the time you took to read my situation and respond.

 

[oportosanto]

I am really sad to hear about it, but if you are not sure about I'd go getting more opinions, maybe some doctor can help?

 

[sureimsore]

Guess I'll throw my 2cents in based on experience...have you discussed with your GP the possibility of a neurological disorder with your vision?

I was having vision snow (like the old TV sets when the signal was bad), and like what you said with the blurry vision that I could not see anything (only happened once, like looking through heavy clouds). The eye doctor diagnosed me with cataracts and dry eye/MGD. I thought the two problems were related, but it turns out not. I have a friend that lost her vision in one eye (temporarily) due to one of the nerves in the face. Sometimes it takes a while to get it sussed out.

Otherwise Willow and the rest make great points and advice.

 

[Trellum]

Some of your symptoms do sound like fibro, but have you seen a good rheumatologist? The fibro diagnosis come after a positive trigger point test, after that then you can have a reassurance what you are dealing with is fibro. If you are not satisfied with your diagnosis, then I recommend you to to seek a second opinion. Most of the time a second opinion is a must, sometimes even a third or fourth one is necessary.