I haven't been on this site for a while, I've been isolating! A friend told me that I should be on the site because of the way I feel.

The Neurontin makes it very hard to find my words or I say the wrong words. The doctors office told me to stop taking them. In general I guess I'm just depressed. As you all know our lives change with this RA and anything else we have. I'm just not dealing with it well. I'm having a hard time accepting that I have RA and fibromyalgia and I'll have it the rest of my life. My quality-of-life is poor. I hope this makes sense thanks to the Neurontin, LOL. Does anyone else feel like this? If so how are you dealing with it?

[Paulineg]

I know how you feel Abby11. I really am trying to stay positive but like you say it is so hard. Whatever we do is such an effort and people without this rotten disease do not realise what it's like. They say they do but they haven't got a clue really. Only we know what the pain, lack of real quality of life, and the fact that it is with us for the rest of our life is really like. All we can do is try to comfort each other on this site and try to 'keep smiling'.

[denvajade]

.Hi there I am sorry to read that you are feeling low! its miserable aye! I too have FM (had that about 16 years) and RA for 71/2 years doing methotrexate injections and it seems to be controlling it presently. I went off it for 3-4 months due to another major, put 7kg on in 5 days and have a terrible stomach issue that is not really diagnosed after 18months of the doctors thinking I had liver cancer, pancreas cancer, ovarian cancer and so the list goes on, had none of those, added to that I have the beginnings of myeloma which is bone marrow cancer so I do know how you feel, its not fair really. I take sertraline just 1x 50mg a day, probably not enough as I suffer from depression, have all my life, I think that depression could be the cause for our immune to turn on our bodys?? I hope that things pick up for you soon, do you have children or grandchildren, I find that's where I get my joy, but they all live overseas so just Skype them. take care

[Hidden in reply to denvajade]

Hi denvajade, you have a lot on your plate! I do hope your treatment for the cancer isn't so bad. I don't know what that medicine is that you take, but I will check it out. I'm taking bupropion but don't think it's really helping. I am on 15 different drugs, I think that's crazy! Maybe others take that much or More, I don't know. You have had both illnesses much longer. I think it's been about 1 1/2 years but the treatment started about one year ago. My kids live far, and they don't know really how bad it affecting me. I take care of both of my elderly parents, that is a BIG stress! I can't work. My brother is helping me right now. Thank God for him!! Thank you for sharing with me, it does help. Wishing you the best with all you are going through!

[denvajade in reply to Hidden]

Hi Abby11 thankyou for your best wishes, really I seem to have my FM and RA back under control, I have methotrexate injections for RA and take nothing for FM but I rest a lot, some days I sleep nearly all day, especially if I do something extra the day before, I know others on here are on tramadol etc but I seem to manage without painkillers so feel really fortunate about that, its the exhaustion that gets me down but I have a hard working husband and he will do anything around the home for me. The myeloma is in the VERY early stages and only got picked up because my blood tests kept showing something indicative of cancer so they just tested and tested. It causes me no issues but if it blows out then its big doses of chemo, but that wont be happening. I don't know about you but I find the depression is the hardest, one day good, the next bad, but I suppose our body's are struggling. Be kind to yourself and rest as much as possible and perhaps an occasional wine. Take care Trish

[Hidden in reply to denvajade]

Denvajade, I am really glad to hear you're doing well. I have been thinking about you and then myeloma. Yes, the depression and fatigue are almost too much to handle. It's a vicious circle for me pain and depression and fatigue. Some nights, Mike last night I got no sleep it's now 8 o'clock in the morning and I'm going to have to go to sleep before I get in my car you drive. As far as pain medication tramadol doesn't work for me so when my pain was in nine I was stuck with nothing. My doctor gave me unload those narcotic but that doesn't work either. I did have something for pain last night I think I would have slept. Again, I'm really glad that that cancer is under control it makes my heart feel better! I hope you have a wonderful day xx

[Hidden]

Hi Paulneg, I am trying. I also have fibromyalgia. From my feet to my teeth hurt and the issue with neurontin (gabapentin ) hasn't helped. I can think a bit better, but I'm stumbling when I walk. I think it will be almost better by tomorrow. Ha! It is tomorrow here. Maybe 6-7 hours I hope. My pain Managment doc gave me a very light pain pill, it doesn't work.the bottle says 1 every eight hours. He gave me enough for a month, so maybe I'm supposed to take that way to get it built up in my blood. I just want something for when I can't take the pain because I don't want to get addicted to it.

I do get up every day, shower and put on makeup. That helps.

Thank you, it really does help knowing that on this site people do know and understand. I wish you well!

[julie_warwick]

sorry you are feeling bad ,it's so hard to be positive with this horrible thing , we just want our lives back don't we ? don't know how to come to terms with it either I'm afraid , if I think too deep I scare myself. but just to say I understand . sending you hugs , x

[Hidden in reply to julie_warwick]

Hi Julie_warwick, wow! You said what I'm feeling in a shorter way. I don't think clear enough to that. Lol! Thank you! Yes we want our lives back! The hug helps too! xx

[allanah]

Hi Abby, glad you came here to talk and get support. It sounds like your gabapentin is a bit strong for you if it muddling up your thoughts maybe.and whilst your thought get muddled it's difficult to cope with pain. I would talk to your pain management again. Neurontin is great for nerve pains etc, anti inflammatories for joint pain and others here will have advice reclaim meds for fibro too, but at the moment it definately sounds as though your medicine balance is throwing you off a bit.

I too got depressed when I first got diagnosed it was a vicious circle, pain caused depression caused more pain. I broke it by getting antidepressants , my problems were still there but the weight and worry melted away of my chest. I also was lucky to get counselling, join a support group, talked to nras. I am aware that this is more difficult for you as you have said you live in Florida but maybe I you search there will be a RA or fibro support group as it's always nice to talk to others, or maybe confide in your brother?

So firstly though talk to pain management, so you get good pain relief that doesn't knock your thoughts and think about discussing antidepressants I think. Really thinking if you Abby and I'm glad you came on site for support xxxxxx

[Hidden in reply to allanah]

Hi Allanah, I did call the pain Managment doc office nurse. She said to stop taking it. I know I sounded bad and she sounded worried. Told me to call her tomorrow. I am on an anti depressant, but think I need to have another one add or just change this one (bupropion) Thank you for saying your glad I came back here. I know everyone has pain and other nasty issues. I don't want to bring anyone down. I will get on top of it sometime tomorrow. Thank you for being so clear. I will see about a support group too. I hope you are feeling a well as possible! xx

[allanah]

Great news Abby, glad you stopped the gabapentin as advisedby nurse,it did sound a bit strong for you and there are other meds that might suit you better!! When I got my anti depressants I was told same asRA drugs they can take a littl while to feel the difference but I f I felt they weren't helping after 6 weeks to go back as in the docs words there are thousands of different types so one of them will be for you,, I'm glad you are sounding more in control today x

I don't know if nras call America lol but finding a group near you might be a great help. When I went to my first RA meeting I was shocked that everyone looked so well and happy, I did cry and made some amazing friends in my area through it. Going out for coffee with one this morning and strangely we now hardly talk about RA!

You know on here we know what it's like so keep talking, sending hugs across the waves, Axx

[Hidden]

Allanah, I've been on this anti depressant for at least 5 months. So I know I need a change or have something added.

I will find a group here,however I don't want to leave this site. Everyone is so nice. I feel like I have so many friends in the same boat. This is the only place I have been involved in. You mentioned one of my fears about going to a support group......I know I will cry and don't know if I can stop. So much is inside me I fear to loose control.

Thank you for the kind words! I am sending you a warm hug xx

[denvajade in reply to Hidden]

hi again what meds are you on for RA? Do you take amitriptyline? it is good for FM. like everyone has said see your doctor and discuss depression meds because some work better than others without zonking you out. cheers

[Hidden in reply to denvajade]

Denvajade, I'm on 15mg injection of methotrexate, 50mg of embril, 400mg of hydroxycloroquine, prednisone, folic acid and just started cymbalta 30mg the first pill of cymbalta upset my stomach. I skipped a day and took one today. Hopefully I won't get sick again. I'm on bupropion for depression, but not working. I wïll talk to my doc about changing it or adding another one.

Thank you!! Sending a hug to you! xx

[denvajade in reply to Hidden]

Hi Abby I am concerned for how you are feeling, can we be overmedicated??? I don't know,I too have 15mg methotrexate, folic acid and sertraline for depression, the specialist wanted me on prednisone but already got weight issues so turned it down. I was on Cymbalta in Australia as it is really good for FM but NZ does not allow it, it is an antidepressant. Amytripyline is an antidepressant too, it is good for nights as it helps relieve pain and helps sleep. my specialist in australia insisted I take something to help sleep ,he said it is the only way the fibro wil heal. please let us know how you get on with the doctor.

[Hidden in reply to denvajade]

Denvajade, I think for sure I'm overmedicated and on some wrong medication I see the doctor on the 13th and I will let you know if she's willing to change anything or stop anything. I'll tell you i think doesn't kill me my liver will. LOL

[Trulyfedup]

I'm so sorry you are feeling so low...it is very hard, I have days where I dread waking up and I panic when parties and events are coming up because I know I probably won't want to go...you're tired all the time and as you said people say they understand but how can they...Gababentin can give you trouble with your teeth and gums as it affects nerves all over...I was on it for a while but one, I put on a great deal of weight and two, it screwed up my head but it is a wonderful pain relief, I have nerve damage in my legs so it helped with that but the side effects were too much for me...I really feel sad for you that you are in such a low place as Allanah said...join others and keeps on this site because everyone on here does understand...I'm sending you smiles..maryxxx

[Hidden in reply to Trulyfedup]

Trulyfedup, you are so kind to make e feel so welcome here! I wasn't on the gabapentin long enough to help with any pain. However, this morning was so bad with speaking it scared me. My words were all wrong, I kept forgetting things. And I was scared to drive. I had to have someone drive me to my dads to give him his meds. My balance is still not good but my head is much clearer. I think. Are you on a lot of different medication? I'm on so much I can't believe it can be good for me.

I plan to get some sleep, shower, put on make up, put a nice out fit on and go grocery shopping. I will have a better day. Because of you, and everyone else I feel so much better. I will make sure I accomplish at least one thing. I got the smiles you sent! Lol. I'm sending some back and feel good vibs! xx

[oldtimer]

Have you been on a self-management course?

I found it really useful for putting things in perspective and making me accept that these techniques actually apply to me (rather than pretending that I would be fine some day!).

NRAS I believe run disease specific courses(?), Pain Clinics often run them, and there are the EPP courses (Google EPP for details of your nearest contact), which is what I did and now help as a tutor after some training.

Every course I do, helps me to manage my condition better and helps me to be assertive about what I need from the NHS, etc. It helps me to manage with the lowest doses of medication and keep positive about what I can achieve. Some of the people I have met are amazing and I have learnt so much from them.

[Hidden]

Hi oldtimer, I have not even heard of that, but it sounds like something that really benefit me. I will google it. It sounds very interesting.

Thank you so much for the information! I will check it out today.

Sending you good vibs and wellness!

[Hidden]

I'm back oldtimer! I googled EEP and stocks come up. Then I added for details of nearest contact, many different thing came up except that. What does it stand for? Are there other words I can use?

[Philip]

Hi Abby, welcome back, you have a good friend, so do as your told lol

[Hidden in reply to Philip]

Hi Phillip, lol I am doing exactly what I'm told! I know my thinking is compromised right now. So I'm listening I'm doing my own supposed to do. Thank you! You got a laugh out of me on that one.

[abednegomonkey]

Sorry to hear you are struggling. One thing I would add about Neurontin is that i found taking 100 mg was just as good as taking 1000 mg - and my brain was considerably less scrambled!! You do have to reduce the dose quite slowly but I found it worth it. Just 100mg at night takes the edge off the nerve pain. The pain clinic used 1500 mg a day - as it is an anti-convulsive drug it is not surprising it scrambles our brains. I have got so frustrated with not being able to think as well.