Arthritis getting worse

magicdragon

Hi all, sorry it’s be so very long since I last posted but all will be explained. Hope everyone’s getting on ok ..number
1)
Last time I came on I had felt very pressurised by the rheumatology team to start methotrexate, it had been made out to have no side effects what so ever and more or less made to feel very stupid.

I started metho 7.5mg and was supposed to increase to 15mg within the month. I never did things went very bad 3 weeks mouth ulcer, 2 chest infections and pleurisy. My bloods came back out of the three types of white blood cell I had, two I wasn’t producing and the other was severely low. My gp was very worried I would get pneumonia which I had as a child. It got to the point that I had an appointment to see my dermatology consultant and he took one look at me and said just don’t take them which if he hadn’t have said that I would have anyway as I was so sick. Also throughout the whole time I had bad sickness.

Anyone that’s reading this that might be starting metho I know I had a very unusual bad reaction so don’t get instantly put off as I know from on here it helps many people but just understand the possible risks. I was just annoyed that I was made to feel so stupid I lost about 3-4 months through this of my uni as I was so ill I am having to take my exams now.

2)
Got evicted from my house that I had been renting for the last 8 yrs. The reason why was my landlord had done no repairs for the last 6 yrs which resulted in water pouring through my ceiling. Damp (with asthma not good) and most importantly NO HEATING! To name a few there where many more. I asked and asked for them to be repaired until one night he ended up threatening me and I had enough and reported him to housing enforcement. I told the housing officer 6 yrs I think is enough notice don’t you ? As I think all of you would appreciate having no heating was so painful I would get to the point of violently shaking in floods of tears as I was in so much pain. I had portable heaters but they did little good as there was no loft insulation.

Anyway he evicted me because I was on a rolling month to month tenancy so he could but he did because he thought he could avoid doing the work.

So struggling so hard to find somewhere that met my needs enough was hard as I needed to stay near my gp as they are very good. Found somewhere and finally moved. I was really scared about how the hell I would do it on my own but I had alot of help offered which was very nice as I couldn’t do it myself.

3)
In the midst of this I got moved from the registrar to my consultant who last time I saw her was 2 yrs ago. I had x –rays on my hips, hands and feet as I had been suffering with increased pain in my hips. I asked about the test results and they said they were all fine (arthritis is in my knees). Until I went to my dr to see the nurse for bloods. I asked what the letter had said as she was looking through my notes anyway as I hadn’t got the letter they had said that they were going to send out to me. She showed me the letter and it said it had spread to my right hip. Im telling you my mouth hit the floor mostly with shear annoyance that I wasn’t told and i had to learn that way. I then called the team back and explain I never received the letter and I was upset (to say the least) and they said ok!

4) So I’ve been back and forth to see the consultant rheumatologist after being moved from the registrar. The two things that really both worry me and annoy me are the fact that I tell her how much pain I’m in and she justs tend to go yes ok ? as if to say well what you want me to do about it and also just recently they continuously say you must get some reassurance in the fact that it’s not active?!

WTH! No not overally. Personally I think yes my arthritis might not be the most active ever seen but the fact that within the space of one year my arthritis has spread to my hip scares the pants of me!! I’m 25 now and I just think in my head that if this continues the way it is it could be in every joint in 10 yrs.

Also I get pain when my CRP and ESR are low which I know many on here do to but when they are low you’re made out to be a big liar! I mean C****t (edited by Mod ECM) I could do better things with my life that fake this if it was true! So they don’t know if it’s partially my muscles which I think could be true I have most symptoms of fibromyalgia but they don’t seem like they want to see if it is that.

So I’m staying on the sulfasalazine I’ve been put on meptidazonal (pethidine like) by my gp. I also went to have a cortisone injection into my hip which my consultant suggested. I’ve had alot in my knee so didn’t think it would do much good and personally it feels like they are only doing it to try and shut me up. I had a phone call of her asking if it had help and I explained it had abit and she automatically turned round and said its muscular and see you in a few months! That I need to go to physio which I said unless they’re going to do something different I can’t see how that’s going to help. I also stated that my finger is becoming badly deformed and I’m really worried about it and she said nothing.

5) Got my first appointment to see the consultant at the pain clinic the day before my birthday (yay). I was refered to them by my gp who thought it was a great idea and wrote a passionate letter of how concerned he was about me. The consultant and the team seem to listen alot more. I’m getting trigger point injections into my back in the muscles and referred to their pain management course (worth a try I though). He was much more of the opinion that its serious and he stated complex and also thinks it maybe muscle also. So really I would love people’s opinion of this. I’ve got my pain consultant and gp really concerned wanting to try all they can and then rheumatology couldn’t care less. I’m considering asking for a second op as there’s another consultant and I live in between to hospitals so can go to either. The other hospital has an award winning team (only found this out recently).

6) I’ve also got a social worker assigned to me from the disability side who has arranged an occupational therapist to come around and im getting a banister put in and a handrail in the shower and I’ve already got my shower stool

6) and finally I was on DLA high mobility and lower care. I filled in my form fully didn’t leave anything out and they have refused me on both aspects even though in the last year things have got so much worse. I had rung them two days before and they said to me that it had gone up to the decision makers but they had lost part of my file but don’t worry they would try and make a decision anyway *jaw hits the floor*. I didn’t say anything and I know I should of but I was gobsmacked and in a great deal of pain that I couldn’t get the words out. Also they used a incapacity medical from 2yrs ago like they did last time that’s no longer relevant as in the last 2yrs things have got very worse. They didn’t contact my gp consultant no one! Didn’t even look at the DLA medical from last time. I swear it’s just madness. So the social worker is getting my help from the welfare rights department .

I could really do with some advice I really think I need a second opinion as them not doing anything is harming my health and sorry for the long post

Magicdragon

speedalong

Hi Magicdragon,

wow things are tough at the moment, but at least you have a good GP and the pain clinic seem to be listening and helping you. I don't see a rheumy I have ortho as I have OA ...

Is your social worker helping you appeal the DLA? If not get the CAB to help you, this seems to be the pattern these days - people apply, get turned down and have to appeal to get it ... what a ridiculous time and money wasting system ...

Other peeps with your type of arthritis will be along shortly I'm sure.

Speedy

lindalegs

Hi Magicdragon,

Bet your fingers ached after typing that lot :shock:

I'm so sorry you've been faced with all of this - all the stress doesn't help with arthur either does it? :?

I don't know what I can say to be helpful. Have you tried appealing against the Mobility decision?

I hope you get some satisfaction from going to the pain clinic.

Luv Legs

dreamdaisy

List all your symptoms and go and see another rheumatologist at the other hospital. You need a second opinion and a fresh pair of eyes. You are under a great deal of pressure with everything so you do need to get something resolved. Docs do get in a rut with some patients - they shouldn't but they are human, errors do occur. Not all arthritis can be diagnosed by a blood test but it should give some info/feedback to an interested party.

I don't know what else to say: I've had my meth today (useless drug) and been busy with other stuuf, so not at my best. If I have any more 'bright' (yeah, right!) ideas, I'll come back. I wish you well. DD

nanasue

Sorry to hear you're having such a bad time, I'm not having a good time either with my consultant, like you say they look at you like you're lying or faking it, they should try a day in our shoes. Anyway someone suggested to me to got to PALS (patient liasion service) they help people who are having trouble with hosptial "things", I'm going to give it a go. Hope this helps in some way, and that things will get better for you in the near future. Sue x

dorcas

Hi magicdragon....what an awful time you've been having :shock:

please remember that we are here to support you and you can post at any time. I'm so sorry you were going through all this on your own?... it must have been / is very stressful for you. :roll:

If you have lost faith in your consultant and his team then you can ask for a second opinion and as you have such good support from your doc I'm sure he will back your request.

The housing and DLA issues should be areas where your social worker and the Welfare Rights Officer can help.... but it will take time as the dwp appeal processes are not quick....so be prepared for a long wait to get things (hopefully) resolved :roll:

The pain clinic are excellent... and it is so good that they are helping with your ongoing RA pain. The blood tests don't always reflect what arther is doing so don't feel that you are 'imagining' your pain....the clinic understand that & lots of peeps here know what it's like to have blood results that belie the pain!.

I do so hope things start to get better for you soon.

Iris x

magicdragon

Thank you for all your kind words. It took me several days to type and I saved it in a word doc as I had alot to say but my hands hurt too much. I’ve got a welfare rights person helping me she thinks it’s ridiculous to I’m really worried as I can’t make ends meet atm so feel very uncertain. It really doesn’t help as I’ve been struggling to finish my degree and with this on top it’s not helping. With the pain clinic they are going to do trigger point injections of anaesthetic into my back.

I really think I have an issue with my muscles but I know it’s my arthritis to and when they tell me I should take comfort in the fact it’s not active makes me mad as its spread to my hip in the last 6 months/year and how could it do that if it’s not active? My worry is that if I carry on the way I am my mobility is going to be no existent very soon.

I told her on the phone that I was really worried as my finger had become deformed and she didn’t care; I can’t grasp things with it now.
Has anyone asked for a second opinion before? Was it a struggle?
Many thanks