New diagnosis

[Dar1536]

New to being diagnosed with FM. My brain is exhausted from all of this. I am really active and now I am having a hard time slowing down due to not wanting to give in to the pain in my hip
and shoulder pain. I had a nuclear bone scan which showed nothing...not even RA...I am so confused right now. My Dr put me on methotrexate and I have been asking it now for 2 months. I am seeing improvement...but taking it twice a week my body is on a roller coaster. Now I am having some pain in what I think is my lymphnode in my neck. Needless to say...I am concerned. I go back for checkup this week where he will do blood work. Just need some support in handling this.

 

[Lou38]

It's really hard getting that diagnosis & trying not to do too much but at the same time not wanting fibro to take over our lives. I hope you get some answers soon about your neck pain, fibro & stress are not a good combination! Let us know how you get on.

 

[Dar1536]

Thank you Lou, I am really at a loss....the more I read about methotrexate the more concerned I become....hoping my appointment this week and the blood work is not showing anything wrong.

 

[Lou38]

The drugs in USA are a bit different to the ones used here in the U.K. Or have different names but are the same thing. Is there an alternative that you could try? Methotrexate is usually used to treat rheumatoid but not fibro as far as I'm aware. I'm currently taking Amitriptyline at night which mostly helps me sleep along with anti-inflammatories for hypermobility & a relatively high dose of Co-codamol. This works not too bad for me, the next step is Tramadol or Gabapentin but my GP doesn't think I need this just yet. Usually with fibro it's about finding the right mix of drugs for you & is unfortunately about trial & error. The last few months have been a huge learning curve for me & I go from feeling angry to frustrated to feeling a bit sorry for myself, it's so hard when you're used to being active & have it snatched away from you.

 

[medicmurphy]

Methotrexate is used primarily for flammatory illnesses. Fibro is not one of these. Perhaps suggesting Cymbalta as this treats hero pain which primarily is what Fibro is about? Not as much serious side affects too

 

[Dar1536]

Thank you..I actually go to my doctor today. Have made the decision about changing meds and going to ask about alternative medicines. I have been reading so much about methotrexate and the more I read the more it scares me and so far it has been a roller coaster in effectiveness. Way, way to many side effects to make me comfortable. Also, I am going to get a referral to go to a rheumatologist as I believe there is more testing to be done. I will know more after my appointment at 10. The reasoning behind using the metho is that he has had good luck with others that have had fibro and when their rheumatologist sees improvement they are in agreement. I just don't think this is the treatment for me. There has to be another option. I will keep you updated. There. Are just so many emotions to deal with it truly is so hard on some days. I've been doing the exact same way Lou. There are days when I am trying to do things...even just my normal routine...and I get so stressed...then I get mad and push through not wanting to give in...then the next day I pay for it...not fun at all but I refuse to let it beat me down.

 

[diamond]

We all understand the roller coaster of fibro ..your emotions and a mix of pushing through then paying are all perfectly normal and on a better day thinking was the bad day really that bad then bam its soo bad again you cant remember the good or feeling a bit better days!

It takes a while to find a balance of pacing and resting and whether and which meds to try and we all flit from sadness fear anger and acceptance in no particular order!

Like Lou says methotrexate is definitely not used for fibro in UK its used for RA for which you have inflammatory markers etc.

Our usual starting drugs are any of a low dose anti depressants used for pain and sleep, anti epileptics for nerve /burning pain and lowest strength prescription pain killers like cocodamol and then tramadol or a mix for some people.

Good Luck with your journey...there are so many lovely helpful people on here to support you.

 

[Dar1536]

Thank you Willow....I agree completely. I had my appointment today at 10 and was in there for 2 hours...(I have an amazing doctor). We talked at length about the methotrexate and I told him my concerns and fears about taking it...he agreed completely and also agreed with me going to the rheumatologist....appointment pending...should be getting a call tomorrow from them giving my appointment. So, we are stopping the methotrexate and he has now started me on cymbalta. Just took my first dose today 30 mg a day for 7 days and then upping dosage to 60 mg a day. Maybe this will work since I will be taking it daily.
Thank you all so much for listening to me, it means so much to me. So thankful I found this group.
Much love to you all

 

[Lou38]

That's great you had a good doctor who actually listened, they're quite rare these days! That sounds like a much more sensible plan than taking methotrexate. Hopefully your rheumatologist can help to manage your condition, they should hopefully have more knowledge and understanding of fibro than a doctor. I'm glad I found this group too, I was at rock bottom just a few months ago struggling to manage the constant pain & it's much easier speaking to people in here who understand what you're feeling & going through. I think my husband thought I was just a hypochondriac and constantly moaning of yet another new illness but I guess it's hard to understand when you've never experienced fibro and to other people we just look kinda normal ��

 

[Sam66]

I was misdiagnosed by my first rheumatologist with Rheumatoid arthritis and prescribed methotrexate. I took it for months but it didn't help because I had FM. I am now taking Cymbalta which does help. Glad to hear that you are on one of the FM meds and I hope it works for you.

 

[Dar1536]

Thank you �� to both of you. I just love my doctor...he knows me well and knows that I really hate taking meds daily...and every time I go in more than once a year for my yearly check up he gets real concerned as I am typically really healthy. He is not like a lot of doctors who want to give you 15 minutes and shuffle you out the door. I feel really blessed!! I am waiting for a call from a rheumatologist today to set up my appointment. This is day 3 for Cymbalta to I have high hopes. My husband has been super supportive in all of this...he knows I am never sitting still and how much it pains me not to have the energy to run anymore (I want to so badly). He is so happy I made contact with everyone here who are going through the same things. Praying for all of us here!!