Need a rant...hope that is ok x

kimjessnella

I have OA affecting the top joints in my fingers, knew and toe joints.
The pain can be terrible and I see a plastic surgeon who has suggested an operation to fuse the most effected joint. But when I went to see the rheumatologist I felt he did not see the condition as being anything to fuss about.
He did say there is extensive damage to the cartilage and the bones are rubbing against each other and just told me to discuss the op with the plastics surgeon. He has explained the pain may lessen as the conditions peaks but then went on to say the bones are rubbing against the other, I asked how the pain would decrease and he replied “I did only say it may, it doesn’t for everyone”
I feel every time I asked a question I was not really given and answer and left feeling as if I was moaning about something that really is not that bad.
Some days my hands are so painful I struggle to dress my little girl, do my daughters hair etc and I have to rely on my 9 yr old to help.
The stiffness is awful and the bony lumps are so obvious I feel embarrassed about it. Sounds daft I know complaining about how my hands look but they are so noticeable I feel like I have aged so much in the past year.
The rheumatologist I saw told me to take the painkillers regularly but the ones that work space me out and I work full time and have two children to look after as a single mum it is not possible to be spaced out. When I explained this he spoke to me as if I was a naughty child refusing to do my homework. His comment appeared to give the suggestion of how bad the pain is really if I don’t take the pain killers.
For me not taking the pain killers is not a choice thing but at times a matter of being able to work and look after my girls is more important than the pain I feel.
I feel angry and upset I have been left feeling upset and frustrated with the lack of information and support I received form the one person I thought would be able to help.
I see the plastic surgeon on the 17th March and i hope he is a better help to me.
If anyone else has had the op to fuse a finger joint please let me know as I want to be able to make a fully informed decision about it.

Thank you for listening to my rant.
I feel I don’t really know anyone in my circle of friends or family who really understand to be very honest x

caterina57

Hi K
Pain is a terrible thing, and affects us all differently and management of pain is a trial in itself. I fully understand why you dont want to be spaced out! You have a responsibility to your girls and at their age you need to be fully on the ball!
It sounds like your medic at best has been unhelpful at worst he sounds uncaring and not very professional. Hopefully your Rheummy appt will be better, prepare yourself for the appointment, make yourself some notes and ask direct questions, in particular relating to the success rates of the operation, what is the likelyhood that the op will reduce pain? what are the known stats regarding this? Are there any other medications you could try that will not have the effect your current meds have?
I too have OA and my pain fluctuates, it is definately worse if I do too much! So I have to pace myself. I suspect that is not so easy for you with your little girls to care for, a home to run, and a full time job.
I hope you get some help at your appointment - and come back and let us know how you get on --- and if need be rant some more, we will be here to support you!
Good Luck
Cath

skezier

Hi Kim,

First I am sorry your are suffering the pain so much. bone on bone is horribly grinding and relentless. Too many of us know that one flower. Its a shift thing to have but it does kinda get easier as you find its limitations.

I know you said about seeing an rumo but have you sen an ortho? I just thing an orthopedic opinion could help....

I so agree with Cath as well and pain clinics... get a good one and they help so much. unfortunately they are not all good.... mine does so much and I am so lucky.

It hard to be honest with 'real' people cus they don't always like it and this bone stuff is very isolating. The forum comes in to its own and you are never alone here. This lot are so supportive and understanding.

I really think as well a drugs review might help you. now gp's can do that but they don't really understand oa and the pain it gives.... Well i never met one who does! Ortho's do and pain clinics do which is another reason why they are a good move for you.

Get the ortho referral and possible the pain clinic as orthos take for ever and a day to see you. Also in the mean time talk to your gp if you can. I think a double appointment might be a good idea. They need to know how much pain your in and they need to help you.

hang in there flower and with a bit of luck you will get some ral,help soon.keep in touch with the forum as well cus it does really help to just say how you feel. Leaving you a ((( ))) and a hope. Cris x

frogmorton

I have just lost a huge message to you - this one will not be as good so sorry :sad:

was going to say l wil let the others talk surgery options and stuff with you as I have lesss experience of that, but l DO have experience of being a single parent with two young kids (at the time 8 and 5) while having back surgery.

Most 'strong' pain meds send me funny too. The reason they work is that they have a sort of opiate affect, but some of us are no good on it. Also taking them every 4 hours means you get a boost of the stuff and that can be well-yukky and a worry with driving etc.

You can get co-cos in 8mg codeine and 16 mg codeiene and 30 mg codeiene. Maybe you could 'build-up' rather than going at it full pelt at first. OR some meds are available sklow release over 12 hours instead of 4 this means you dont get that BOOSt I am talking about. I am now on bu-trans pain patches which are a plaster you wear over 7 days and constantly get the meds even in the night.

Can you take anti-inflams ok like ibuprofen or diclofenic? If you can these are more effective than you think if you take them regularly. They dont do the out of my tree bit for me either.


Your kids will be ok honestly they will. Mine are now 16 (next week) and 13 and no lasting damage from my ill-health. they are stronger than you think - having lived on micro meals for a good while, I think it has made them more empathetic to be honest.

Might it be a good idea to look into your finances though with CAB before any surgery is suggested...I still got WFTC when I was off sick for instance.

Anything we can help with just ask we will try.

Love and hugs

toni xx

dreamdaisy

I think I am right in saying that generally rheumatologists don't do much (if anything) about OA: their area of 'expertise' (she gives a hollow laugh) lies with the auto-immune variants of this pestilence. An orthopaedic chap, however, would be better placed to advise and help as they DO get much more involved with OAers, due to carrying out joint fusions, joint replacements, etc. I think you are seeing the wrong chap, could you be referred to an ortho?

As for the pain relief there are alternatives out there and it can take some experimenting to find what works the best for you. Perhaps the bu-trans would be a good option, I haven't tried them as I get on OK with tramadol. I wish you well. DD

skezier

Hi Kim,

Flower at the risk of embarrassing both Toni and her kids I have to say they have turned out brilliantly! They really do have understanding about others and when they come here they do ask me how I cope with the pain the lack of movement and the tiredness.... it worries them a bit i think.

Its just unusual to find kids with so much empathy and yours will turn out the same i am sure. More ((( ))) Cris x

tkachev

Hi Kim,

I just want to say I understand your dilemma with caring for your children.I personally fight through pain rather than take loads of spacey drugs where the kids are left 'unattended'.I get cross when told to leave things for later as there is a massive build up of washing/ironing/ bills etc and it becomes a problem.The medical peeps never seem to understand my decisions either.I just get cross back but I won't change until they are prepared to arrange for after school carers and thats never going to happen is it?

All the best
Elizabeth

kimjessnella

Thank you all for your amazing support.
I am seeing the plastic surgeon on the 17th march who deals with bones etc..(A special hand clinic ) and he has been great so far.
As for pain relief I am taking tramadol when I really, really need it.
I am going to discuss pain relief at the appointment on the 17th and a referral to the pain clinic. This was discussed at my last appointment and think it sounds like something that is well worth trying out.
I am hoping to leave the bone fusion surgery for as long as possible as I don’t fancy a cast for 6 weeks.
It is so good to hear that other people’s children have not been adversely affected by the effects of this condition as I have the most amazing little girls and hearing that has lifted my heart so much.
I am so glad I posted here as it has been so worthwhile, thank you all again xx