Hi everyone!

[Lina282]

Hello everyone! I am 43. I was diagnosed with RA and Fibromyalgia in February 2017. I was on Hydroxi for a year and my Rheumatologist added Methotrexate 15mg /week since Jan 2018.

My pain and swelling is better but the fatigue is making my life very difficult.

I wish all the best for everyone on here! Xx

[sylvi]

Fstigue is the bane of my life too even after having RA for nearly 17yes.xxxxx

[Lina282 in reply to sylvi]

Hi Sylvi, thank you for replying.

May I ask if you ever had your RA in remission during your 17 years? And did your rheumatologist reduced your medication for a while?

I just had an appointment with my rheumy and he said he will start reduce my medication.I am so afraid that it will get worse again as it was before my treatment. xxxxx

[sylvi in reply to Lina282]

Can't say that i have darling i have always had some problem related to my ra. I have just had two drugs taken off me as they are not working and i am waiting for biologics,but i have to see the respiratory team before i can go on them and looking at how i am i doubt i will get it as i have a chest infection.xxxx

[oldtimer]

The fatigue is so difficult to cope with and not well understood by the health care team either. I do try to pace myself so that I don't aim to do too much in one day - doesn't always work as I am still not good at saying NO when I want to do something (and mostly I do want to!). But I know that if I put more than a couple of things in my diary for a day then I won't be able to do the things planned for the following one as I will be wiped out. So planning is really important.

And my daughter keeps pointing out that I still do more than most other people anyway...I just have high expectations of what will fit in a day...

[Lina282 in reply to oldtimer]

Hi Oldtimer, thank you for your reply. Yes I wanted to mention something but I find it embarrassing.

I just had an appointment with a nurse specialist and she was rude,she didn't care about what I was saying about side effects of methotrexate like fatigue and feeling sick. She didn't touch anything on my body but in her report she put that all fibromyalgia tender point was positive. I don't know who I can go to or how can I go to another hospital.

I have 4 children and the youngest is 5 year old. I sometimes find it difficult to get up and do anything really. Or if I have to leave the house then when I feel that I am not able to....that's really hard.

Have a lovely day x

[oldtimer in reply to Lina282]

I too find that really annoying. It's as if they just make things up and it belittles the effort that we make in preparing for the appointment and being as honest as we can.

If the information is not correct, then you can complain to PALS, or if you feel that is excessive, then write to the person involved saying politely how surprised you were to read the information which was incorrrect and suggesting that it 'might have been another patient - it must be easy to muddle up people when you see so many'.

[Lina282 in reply to oldtimer]

Thank you 😊

Yes, that's a good idea.

[Lina282 in reply to oldtimer]

Hi, I went to my GP yesterday and ask for a referral to another hospital. It will be a bit further away but I don't mind the 30mins journey if there will be a better (more emphatic) team...hopefully anyway 😊

If not then I think there is a problem with me and with my expectations. Lol

[medway-lady]

Yup fatigue is bad but Oldtimer has summed it up well, try saying no and pace yourself. Not easy but priority is important when your dead will anyone care if your windows had the cats paw prints on ? Recently due to another problem my husband has doe most stuff and I realise he does'nt see the crumbs left under the toaster or the cup handles are not all in the same direction. Lol And yes I was in remission for over 4 years now no but am hopeful things will improve and I'm alive. xx

[Lina282]

Hi Medway-lady,

Thank you for your reply.

I don't have any friend or anyone around me other than my family so it's really nice to hear from other people with similar problems,feelings and difficulties.

As my husband does cook in our family and I have to face the same things which I did find difficult at the beginning as he doesn't do things in the same way as I do. And he doesn't have eyes for the details. Lol

I still try to accept that even if I am a mother and a wife I am not able to do everything at home....it's difficult 😋

Have a nice day x

[beanieboy]

Methotrexate takes it out of you, I stopped taking it for that reason. Speak to your rheumy soon and see what they can do.

[Lina282 in reply to beanieboy]

Hi Beanieboy, thank you for your advice.

Yes I think it's about Methotrexate but the nurse specialist said that it's due to my fibromyalgia. I can't win I guess. I try to make an appointment to my rheumy then.

[Shalf]

Hi Lina, just seen your post. What a shame! I do feel for you and empathise as I also have RA and Fibromyalgia and fatigue beyond belief! I however, don't have 4 young kids. How on earth do you manage! It beats me because sometimes I can barely look after myself when weak and exhausted let alone 4 kids. Fatigue is a classic symptom of Fibromyalgia. I know my hospital are running studies on this symptom. There is no cure for Fibro. The recommendations are to rest when you need to. Easier said than done with kids. Is there perhaps some social care in your area who could help with school trips, shopping etc? This is going to get harder the more you try to cope because the body just doesn't allow you to rush around all day. It just packs up and your forced to lie down. Fibro and RA together is really hard. There are quite a few members on here with this double whammy and describe the same things. I hope you can get some outside help. Keep in touch. Xx

[Lina282 in reply to Shalf]

Hi Shalf,thank you for replying.

I had to stop working as I spent more time in the manager office crying than on the shop floor. I worked at Boots in the pharmacy.

Now I am not able to manage a job,even if I am on RA meds and my pain is better. I feel many times that I have to lie down and this comes suddenly...for example I wash the dishes and I get a sickness feeling and dizziness and I just have to stop and lie down.

Always in pain and being not able to get up and give food or a bath for my 5 year old that put me even more down....but people don't always understand.

I didn't know that I can get help with school trips or anything,so my husband can't work daytime as he has to do it and the cooking as well. It's just not the same family as it was before my illness.

Thank you for your words xx

[VeronicaF in reply to Lina282]

oh bless you Lina282, sending you big big hugs xxxxxxxxxxx

[Lina282 in reply to VeronicaF]

Thank you VeronicaF xxxxxxxxx

It's lovely being here and meet such a nice people. Xx

[Shalf in reply to Lina282]

Totally sympathise with all you say Lina. Maybe time for a dishwasher? Yes it's a draining illness both physically and emotionally especially hard when folks don't understand because we don't look gravely ill.

The other thing to put in search box is about applying for PIP benefits for yourself and care allowance for your husband. It is just a thought and a bit kindly advice to perhaps help if you need financial support? Extra cash doesn't bring pain relief but it does help to pay for maybe a homehelp, cleaner, and so on. Worth checking it out as many folks on here are eligible for it. Any questions about that I would be happy to help you.

Xx

[Lina282 in reply to Shalf]

Yes it is but when someone finds out that I don't work any longer then they turn away from me and make me feel guilty.

Thank you about the advice,I will look into it.

Also, do you know please who I should contact if I need help with school run?

Thank you for your kindness it means a lot for me. Xx

[Shalf in reply to Lina282]

You will be feeling vulnerable and all sorts of emotions. Forget the ignorant , disrespectful people, they aren't worth head space. Focus , when you can on yourself and kids. Monday, phone the social care department, usually part of your Council. Explain your situation to them and ask for support. Do likewise with GP and ask him/her to provide you with a letter confirming your medical circumstances. You can photo copy that letter for whom it concerns. Phone the DWP ( I will find number and PM it to you) and ask for application form to apply for PIP to get ball rolling. Stay in touch with us sweetheart - We are on your side supporting all the way! X

[Lina282 in reply to Shalf]

Thank you so much ❤ I never had this much help like now I am getting here. Xx

[Shalf in reply to Lina282]

We all understand here and most do try to help others.

Number for PIP is: 0800 9172222

One step at a time and we can help moving forward. Let us know when you receive application form.

Always be aware that there are many people who we come in contact with who are either plain ignorant or just genuinely unaware of how RA affects people. Try hard to rise above this and don't allow it to obstruct your daily activities in doing what needs to be done. No one here will close the door on you or anyone in need of a bit support.! Xx

[Lina282 in reply to Shalf]

Thank you. I will call them Monday morning. Xx

[Shalf in reply to Lina282]

Okaydoke Lina. Keep us posted. Xx

[Lina282 in reply to Shalf]

I just had a rough few days as my little one had a sickness bug for 4 days. We took her to gp and they said it's winter vomiting and will go soon....she was ill for 4 days and lost lots of weight. She wasn't big but now she is 13kg.

I phoned PIP and now I am waiting for a form but I am a bit anxious about it. 😏

Hope you are well xx

[Mmrr]

Lina282 I have nothing new to offer than has already been said, but just want to say you will get support here from people who understand how you are feeling.

[Lina282 in reply to Mmrr]

Hi Mmrr, thank you for replying.

Yes I just realised that I am spending more and more time on here...and I think that helps emotionally for sure.