When do I know what is causing what... is it the RA, or is it the Fibromyalgia, or is it both??

Hello friends- Having a VERY difficult time lately. I posted that I was diagnosed with RA and Fibromyalgia all on the same day back in April of 2013. I feel I have not gotten any better at all. I was put on Plaqunil and then was given MTX injections for four weeks until I got the shingles. So they say.. not sure if that is what is really was and neither did they.

I had to stay off the MTX for 8 weeks and just started back on the MTX two weeks ago. I still have lots of morning swelling in my hands and feet and stiff. My neck, shoulders and hips are getting bad as well, especially my shoulders. It even hurts into my clavicle area and across the boney part of my chest wall. Nothing seems to help it except for prednisone which she weaned me off about two weeks ago since I also have Degenerative Disc Disease. GREAT!

As some may remember, I posted a few weeks ago that I received the flu shot on a Friday and on Saturday I found a knot/ lump in the hollow part of my clavicle area. Scared the life out of me. GP was booked and so I seen my dermatologist for a re-check on my other friend... roscea, and she felt it was a reaction from the flu shot and said wait a month and as long as it does not get bigger, it should be fine and go down. My rheumy's nurse called for her to check on me and said she was not happy with me waiting a month and wanted me to see my GP asap. I was feeling better, then this has left me wondering if she thinks it is something more.

I am due to go in today at 4pm USA time, and have gotten myself all worked up. I tend to do that. I seem to have loads of shoulder pain and clavicle pain anymore at night especially since I am a side sleeper and if I lay on my back, my neck kills me.. so needless to say, not much sleep for this 52 year old from flipping and flopping all night.

Just wondering if anyone else has experienced this and if this is a red flag the doctor has thrown up for me that has caused such anxiety that it may be something bad? Every time I see my rheumy and tell her this hurts or that hurts, she will say it is not the RA, but not tell me if it is the Fibromyalgia or what it IS!!! I have not been able to get a hold of this disease that has caused me to feel so unwell all the time and I have not been on the MTX long enough to see if that will even help. Just getting more and more discouraged of the "not knowing what it is " that it seems to pull me down even more. Cannot seem to get a straight answer as to where all the different pain 24/7 is coming from. It is SOMETHING,,,, so which is it, or is it both. She is a good doctor and many like her the area, but getting a straight answer or this is what it is... she has a problem with. She hands me leaflets when I have questions. REALLY? I am paying her for the answers....

So very sorry for the book I have written, but after over a year of this, you would think I would know more or feel better.

Thanks,

Lois

9 Replies

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  • Sorry things are so lousy for you just now Lois. I don't have Fibro but will say that it took me ages to feel okay when I started MTX. I reckon this was because I'd had nine months or more already of unchecked RA for it to get to grips with. Anyhow everything did get a lot better for a while. In some ways it's much better now - three and a half years on. I'm no longer in shock about what is happening to my body and nor do I have terrible joint pain but I do have neuropathic pain which to me is just as bad and much more weird!

    So I'm off all drugs now because of severe side effects and never know if RA is coming back or if this is nerve pain that aches and feels like funny bone pain in knees and ankles and calves and shins - and tonight my toe pads ache too despite both my feel feeling semi anaesthetised by damaged nerves all the time. Honestly you couldn't make it up?!

    I think the pain we get is often referred pain or just nerves that have become over sensitised perhaps. I don't know how you can differentiate I'm afraid as I don't have the same mix as you do - but hang in there and I'm hope and believe that the MTX will kick in someday soon. Twitchy x

  • Thank you so much Twitchy. It does get frustrating because I never know when it could be a serious thing going on, or the Fibro which is painful but less serious.

    I do also pray that the MTX will kick in and help. I had to go to the doctor today and found out I have bronchitis... yay! :( He put me on an antibiotic and said that it could get serious quick so he wanted to give me that to help ward off any more infection. He also took me back off the MTX for a week... I just got back on it after off for 8 weeks due to shingles. I may never find out if it works if I do not stay on it... :)

    Thanks again for your reply, it means a lot to me.

    Lois XX

  • Lois i have both RA/Fibro and cfs and at times i don't know which one is causing the trouble. I have worked out the pain in my shoulder blades is Fibro and the pain in my hands id RA. I am so fatigued as well. If i do anything i then have to stop and rest as i am so tired and exhausted. I am sorry your suffering so much. Hugs from me.xxx

  • Hi Sylvi- I am so sorry you are having so much pain as well. My shoulder pain is more in my shoulder joints to the point I have a hard time lifting them or doing my hair. My hands also bother me... especially my finder and wrist.

    I hope you get some relief soon.

    XX Lois

  • hello Louis, sorry to read about how much of a tough time you are having. i have both RA, diagnosed in jan this year and fibro, diagnosed about a month ago. i received my consultants follow up letter yesterday after his diagnosis, and feel i am in the same boat as you! i don't feel like he has got to the bottom of things, and doesn't seem to see the whole picture of my pain and fatigue.

    i don't know what is causing what!! i ache all over, terrible pins and needles and burning pain and feet and hands, nausea, gi problems, dry eyes - you name it! i tried to take amyltriptaline for the fibro but had such a bad reaction, so am taking a few weeks off and then will start gabapentin. its a tough journey and you have all my sympathy!

    i have been referred to a pain clinic - do you have one where you are? i am hoping they can resolve things a bit, i feel quite anxious at times because i don't know what is really going on any more, and i don't know how to really get to the bottom of it. it doesn't help when the professionals don't explain things very well - maybe its the nature of having RA and fibro!

    i hope you can get back on the metho when you are feeling better and if that doesn't work, maybe there is something else you can try for both the RA and Fibro.

    I have been working a lot on relaxing my muscles and not getting stressed so much, i think this has helped a little bit, proper breathing, hot baths, relieving tension in the neck and shoulder.

    sorry i don't have the answer, but i thought i'd write to say you are not alone! if i find a magic remedy, i'll let you know and obviously if i get some clarity from the pain clinic, i'll get in touch!!

    take care dillie x

  • Hi Dillie- thank you so much for the reply. I hate saying it, but am glad I am not loosing my mind with all this pain and not knowing what to do with and about my body. I can tell that I am tensed up all the time anymore. Yes, we do have pain clinics here and I have been to them for over a year with no help. My pain management doctor seemed like it could not possibly be that bad.... well, let her walk a mile in our shoes and then act that way.

    She had me start PT which only made it worse. I tried it three different times and each time the same. She then put me on Gabapentin and stated me off with 300mg per night for a week, and then wanted 300mg added each week until I got to 1800mg a day. WHAT???? I did well on the first week with the 300mg at bedtime, but when I added another 300mg the following week in the morning, it totally sent me into a brain fog. She had me cut back a week to just nights and try it again. I did, and the same thing. She said my body was very sensitive to meds, I have always been that way, so unfortunately I could not take it.

    I started back on the MTX two weeks ago to see if it would help within 12 weeks, well yesterday I went to the doctor to find out I have bronchitis. UGH!!!! I am on an antibiotic for 10 days and cannot take the MTX again for two weeks. I will never see if this works.. :)

    Yes, if you find a magic remedy, do let me know. :) The weather is changing so much here in the States and my joints ( all of them ) can tell. I do agree also that doctors just do not seem to get it. I really feel they need more education on these disease especially when you have more than one going on. I too have all the things you mentioned above... have my eye apt with my eye doctor on Monday since I also take Plaqunil. I can really tell my eyes have changed in vision.

    Thanks again and stay in touch. :)

    Lois

  • You could consider getting another doctor. Sometimes it seems easier to stay with the one you know, especially if they are good in some ways, but I also belong to a PsA forum based in the USA and there are people there with both PsA and Fibro whose rheumys seem to do their best to differentiate between the diseases in a helpful way.

    Another thing I would look for in a rheumy is their understanding of how difficult it is to cope emotionally with these diseases. I reckon your doctor should respond to your need to know what's what - being in the dark definitely makes it more difficult to cope.

  • Thanks Postle2- You are so right, dealing with the RA/ Fibro is hard enough and then when the emotional rollercoaster is added to it... :(

    I think the doctors are so over booked that they herd you in and out so fast and what you are saying or trying to say mostly goes over their head. I think they want to help, but need that money in on as many patients they can fit in a day seems more important at times. Again, I really feel our doctors need more education themselves on these diseases that really bring you down.

    I went back to the doctor on Thursday to re-check a knot I found over two weeks ago in the hollow part of my clavicle ( which scared the life out of me ) and come to find out I have bronchitis now and have to stop once again... the MTX for a week while on this antibiotic. So, it seems like one hurdle after another. He did not feel that the lymph node was cancerous, but is having me check to make sure no others pop up or this one becomes bigger. Some of my RA family on here has told me that they get lumps and knots from time to time as well. This one had not gotten any bigger, but has not went down either,,, so I am trying not to worry. I think that my lymph nodes always somewhere in my body.... neck, shoulder area, underarms and groin always seem to ach a bit or feel a bit swollen. Someone said it could be due to the RA and my body is always on alert fighting something.

    I am going to speak with my rheumy once more to see if I can get some CLEAR answers to how and why I am feeling this way, and if no clearer, I will have to look somewhere else because it is very important to me and all of us I believe to UNDERSTAND WHY we are feeling like we do.

    Thanks again,

    XX Lois

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