How arthritis manifests itself...

Agape

Hi all, I have a question. I am sure that arthritis can be different for all of us, but I wondered if anyone could help me. I get a lot of pain from my right SI, which can be at times so painful that it's difficult to move, but I am also starting to get pains in my hands, elbow, knees etc. This isn't as bad as my SI, but nevertheless it can be painful and I am beginning to worry that things are starting to change. Occasionally I take pain killers just so that I can sleep. My work is very physical and I already wear knee supports which do help, but now my work seems to be getting harder and harder for me to do. Can arthritis manifest itself in this way or am I being over concerned? I see my Rheumy in January and I will mention this, but until then I wanted to ask everyone here if this was their experience.

I am not over keen on taking strong meds, but on the other hand I do not want to leave things so long that I do more damage. Any experiences you wish to share would be helpful.

Thank you for any replies

DebbieT

Hi,

As uve only mentioned painkillers am I right in thinking you have Osteoarthritis rather than one of the Autoimmune types?

I have PsA & OA in many joints so I'd imagine that it spreading is quite likely. I'd ask my GP for xrays of the new problem areas if I was you, they'll be useful for ure rheumatologist at least. Hmmm Most people with OA don't see a rheumy so maybe my earlier assumption was wrong? If so do you take any DMARDS or Anti TNF's?

Regarding pain medication I'm a great believer, I was taught this at pain management classes, in taking wot ever we need daily to keep our bodies as pain free as possible. Often just paracetamol daily then in a flare I use 'top up' meds. I think you need to chat with ure GP regarding pain management too!!

I 'seize' up regularly too btw, its horrible.

Good luck.xxx

Agape

Hi DebbieT

Thank you for getting back. I have an autoimmune disease, which causes me problems with tiredness etc. I was put on Hydroycholoriquine but had a bad reaction to it so we are kinda monitoring right now. Rheumy knows that I am not over keen on meds so she hasn't suggested anything else right now, not sure if I should ask for something! GP I have found doesn't really know what he's talking about so I don't really have much faith in him. I do have psoriasis, although this has improved a lot recently, but about four months ago I went for an x-ray, which showed osteoarthritis in my SI. I have had knee ops years ago and was warned that I would get arthritis in them but wasn't sure if this was all the same thing or if I was being over sensitive! The pain makes me feel 'old' and so I try to work through it, but that just makes things worse and I keep going back to bed. It's scary when your body isn't working properly. What is an autoimmune arthritis? Would I be susceptible to this having already been dx with another AI issue, I know AI's like to invite friends!

Sorry for my ignorance, but what are TNF's? I have been offered a place on a pain management course, but not sure if I will be able to get the time off of work to go as it falls on days that I work. :-(

The other evening I was in agony just trying to get off of the sofa! How ridiculous is that!!! :-(

Agape

Just looked up Autoimmune Arthritis, it's RA, right? I haven't been dx with this.

Is there a basic med that's taken with Osteoarthritis to help with pain that's not too bad to take in the long term? I have changed my diet to help my body opposed to making it work harder by putting junk in.

It's so good to know that this forum is here and that we can help one another and share our worries and experiences.

DebbieT

Hi,

I have a number of autoimmune problems too. Psoriasis, Psoriatic Arthritis (PsA), Fibromyalgia which is looking more & more likely to be classed as AI & I also get blisters on my balls which you become more prone to getting if you have autoimmune diseases .... Lovely Other illnesses such Lupus SLE are also in the autoimmune camp I believe.

There are many types of autoimmune arthritises RA being the most well known I think. Psoriatic is another type & affects different joints etc
I'm very surprised you haven't had blood tests to see if you are showing inflammatory markers in ure bloods!! The tests would be called either ESR or CRP, in case you find out you get asked to have them done :?

I would consider changing to a different GP or even a new surgery if you aren't happy with ure care!! Also this all sounds like it's worth discussing with ure rheumy in January. Fatigue, unless its from ure other AI problem, usually accompanies AI types of arthritis.

To be really honest, I'm not all that knowledgeable about all of this stuff. I think you could benefit from ringing the Arthritis Care Team on Monday. I'm told they're very knowledgeable as well as being more able to explain everything to you than I am I believe you can also email them if you think you'd prefer that

Regarding how old ure body feels, I totally relate!! I'm 43 & my Mum is 65, she has far superior mobility than I've had in the past 3 years!! :oops: :oops:

I think it can be too easy to get ourselves caught up in things we can't really change so I'd rather try to concentrate on things that I can achieve or at least I can try improve ... My big thing this year has been to give up my 300 a week cigarette habit, I've been a non smoker for 3 months That should help my lungs, Psoriasis & Psoriatic arthritis at least

Regarding ure pain I, personally, would be listening to my body!! It often uses the pain to tell you uve done too much & now need to rest. For OA it's only painkillers & the odd anti inflammatory that are used used to treat it. I believe it's destructive nature can only be delayed, with a healthy lifestyle, certain exercises & stretches (see a physiotherapist), not stopped

Sorry I can't be more helpful. I'm sure all of the clever ones will be along in the morning & as I said maybe contact the AC Team

Take care.xxx

stickywicket

Despite Debbie's protestations, I think she actually is 'knowledgeable about this stuff' and has given you some good information about auto-immune versions of arthritis and the meds needed for them.

Basically, there are two forms of arthritis, OA and the auto-immune versions. RA is an auto-immune form of arthritis but by no means the only one. Another auto-immune form is Psoriatic Arthritis (PsA) and, if you already have both an auto-immune disease plus psoriasis, I think it's important that you get on one of the DMARDS (Disease Modifying Anti-Rheumatic Medications). Hydroxychloroquine is just one. There are several others, and many on here have to experiment a bit before finding one that suits them. One man's meat....etc etc. I had a very scary reaction to leflunomide but it didn't stop me trying methotrexate (which has been very successful for me) and I know others have no problems with leflunomide.

OA will always get worse. We can hold back its worst excesses to some extent by a good diet (Well done on that front ) exercise, distraction and pain relief but it will progress over time.

The damage from auto-immune types of arthritis can be held back by DMARDS but only rheumatologists can prescribe them. It's not that your GP is 'useless'; it's just that he doesn't have the specialist training needed to deal with auto-immune diseases. Asking him to do so is a bit like asking him to perform knee replacement surgery. He doesn't have the training.

I do understand your reluctance to take 'strong meds'. I think most of us start out like that. But auto-immune types of arthritis are strong diseases and they require powerful meds to hold them back. Although methotrexate helps me enormously these days, it wasn't available when I was first diagnosed and, as a result, I have all the characteristic twisted joints in hands and feet. You are probably still in a position to avoid that. If your rheumatology appointment isn't until January, I think you should ask for it to be brought forward and have a good chat with your rheumatologist about your joints and psoriasis so that it can be determined how much is OA, how much might be auto-immune and what can be done about the latter. You might not want strong meds but, if the rheumatologist suggests them, I'd be guided by that.

You also say 'The other evening I was in agony just trying to get off of the sofa! How ridiculous is that!!! ' That sounds pretty normal to me I can't get off any sofa or armchair unless it has been raised higher in some way. An extra cushion or two might help.

Kittkat

Hello I havn't read the replies but probably will repeat. Sounds pretty normal to me for athur. I'd get it treated asap don't let it get worse. Take care
Kat

Agape

Hi everyone, thank you for your replies.

DebbieT: I am so sorry to hear of your health issues. Like you say... AI's can be so varied and at times difficult to distinguish between which ones you have.

My ESR is positive, I haven't looked for CRP, or is this the same thing? My RF was very high and this is one of the reasons amongst others why I get frustrated with my GP because it was on my very first apt when he gave me my blood results and he told me that I had RA without me even having seen a Rheumy or done any differentials or other checks that only a Rheumy would/can do!

Thanks for the idea of ringing the Arthritis Care Team, I didn't realise that they would be able to help me. :-)

Big congrats for giving up your cigarettes, that is amazing.

Thank you for your advice you have been really helpful.

Stickeywicket: Thank you too for your post and information. The reactions and potential long term affects is what concerns me, I think this is why I am resisting meds at the moment. There is a plus and a minus with these things. However, I will definitely discuss these things with my Rheumy on our next apt. Would the DMARDS etc take the pain away and enable me to be able to move better? Today my knee has periodic pains shooting through it and is occasionally giving way, making me limp a little. :-( Is this what arthritis does?

I will definitely bring up my joint pain etc etc with my Rheumy, I normally try to make a list so that I don't forget something. In fact I have just updated my list now.

Thanks for your post :-)

Kittkat: Thank you for you post and advice.

Hope you have all had a good weekend and are feeling well.

hileena111

Hi Agape
I could be wrong but I think DMARD's are only for the auto immune type of arthritis....not osteoarthritis.
Sorry to hear about your pain.....I've got OA in hips, ankle lower back and neck.
I've had one hip replacement and am due to have the other one done 13th December!!!!!!
I also have spinal problems so as you can see I'm no real help as far as auto immune is concerned
I take paracetamol and an anti-inflammatory .
The rest is just self help.....like relaxation, distraction, heat or cold {whichever suits your arthritis} pacing yourself and using any aid that will help you......don't think of that as giving in......its helping you do things you might not be able to do without it
I have a car, a 4 wheel rollator, crutches, and a scooter {rarely used these days} Oh and a few sticks but don't find them much use for me now. So I've got different things for different occasions
I refuse to be stuck in the house

Let us know what happens

love
Hileena

Agape

Hi Hileena, sorry to hear about your health problems and I do hope that all goes well for you on the 13th of December. You must let us all know how you get on.

What is the anti-inflammatory that you take? Perhaps I could ask if this would suit my issues.

I agree with you, life will and must go on. I don't intent to give in, but my pain does get to me sometimes.

Thanks for your post

DebbieT

Nope ure correct, DMARDs are for auto immune types.

If you have had a RF+ test I've no idea wot ure gp & rheumy are playing at not having you on proper meds. I understand ure afraid of them but to be blunt, sorry, if you don't take the treatments then ure very likely to cause more damage than necessary
PLEASE talk all of this thru thoroughly with ure rheumy!!

Btw the other auto immune types tend to show RF-, mine, psoriatic is one of them!!xxx

Agape

Hi DebbieT

Feeling a bit worried now, but extremely grateful for your advice. Just have my blood results in front of me now. These were taken on my last visit in Jun 2013.

Rheumy doesn't do levels of RF now as she says that if you have high levels, then you will always be + for RF so she doesn't check them! :?

Anti SSA 52 Antibody >8.00 (H) (0.00-0.99 AI)
Anti SSA 60 Antibody >8.00 (H) (0.00-0.99 AI)
Antibody SSB Antibody 6.2 (H) (0.00-0.99 AI)
CRP 1.7 (<5.0MG/L)
ESR 20 (H) (0-15 MM/H)
My vitamin D levels were quite low but I have bumped them up by taking supplements.

Does anyone understand the above? What meds should I be asking to be on? I really don't want to damage my body any further!

Thank you so much for helping me. x

Agape

My head is buzzing now... If I have shown a RF+ result, does this mean I have RA or not? My Rheumy says I have Sjogrens Syndrome and X-Rays show Osteoarthritis!
I feel confused, why wouldn't she put me on meds if I really needed them. I would have thought that she would have explained better and made me see the consequences if I don't take the meds!

So sorry to be a nuisance with all of these questions. I think people who are suffering with these problems know better sometimes than the Drs who don't live in our bodies!

DebbieT

Yes if you've tested RF+ thats all they need to know if RA is suspected.

I've done a bit of research as uve said wot ure auto immune illness is .... It makes a massive difference!! I've copied this link which explains it all in easy to understand chunks. *Mods I really hope ul allow this link please?*

link deleted. These websites may be fine but .com mainly means commercial. We don't know how 'safe' they are. Look at the information on this site for help first


I'm SO sorry I caused you concern, I had assumed you had RA because of ure RF+ test. From all of the information uve now given I think you've had a positive diagnosis of Sjogrens Syndrome & uve since been diagnosed with osteoarthritis (OA) from changes seen in xrays. The OA will need treating by ure GP with pain killers & ureself with diet & exercise, I'd still ask for a referral to a physio Ure Sjogrens will continue to be treated by ure Rheumatologist.

Here's another link for info on treatments etc for Sjogrens:

link deleted by Moderator YEH

Hope the info helps to settle ure mind. ((((hugs)))) xxx

stickywicket

Do make sure you tell the rheumatologist about the psoriasis though

Agape

Hi DebbieT

Thanks for your post. Don't worry about the link, I will try to search on the internet for more info.

No worries about causing me concern. My real stresses are if by 'not' taking meds I am causing myself more damage in the long term, but as you rightly say I really need to chat this over thoroughly with my Rheumy and GP.

Stickywicket: I did mention my psoriasis before, but with all the patients that my Rheumy sees I am sure I need to remind her again.

Thank you all for yr posts and helping me. xx :-)

stickywicket

I hope I'm not harping on It's just that docs can't remember everything we've ever told them and I know of one or two people who only got a clear diagnosis once psoriasis reared its ugly head

DebbieT

SW if you could see mine (psoriasis) at the moment ud know how apt that comment is I totally agree with SW, you definitely need to remind them of ure psoriasis!!

Regarding damage, I said that as I'd assumed ure +RF meant you had RA. That you have Sjogrens puts a totally different light on it as it doesn't cause damage to joints etc does it?

Mods, I apologise. I can't believe I didn't check on here 1st ... I forgot that the information was wot brought me to this site in the first place!! Oops :oops:

xxx

Agape

Hi DebbieT and Stickywicket

I will definitely mention my psoriasis at my next apt. Sjogrens doesn't normally damage joints but OA does, I think! My SI surely doesn't feel normal. :-( Something that is strange though, since I was on and then came off of prednisone my psoriasis improved, but recently it's looking like it may be making a come back!

Take care :-)

DebbieT

Hi,

That ure psoriasis may be returning after using oral steroids is no surprise .... Rheumatologists like to use them as they're a very useful tool in their medical kit BUT ..... Dermatologists hate the the stuff!!! It, unfortunately, can cause a flare of unstable psoriasis. It usually takes around 6 wks to make a difference to our skin.

I hope this helps Agape.
Take care.xxx

Agape

Hi DebbieT

That's interesting, I never knew that. I wondered why it had got better, but it's taken more than 6 weeks to show it's ugly head again. I will make sure I keep an eye on it.

Hope you have had a good day today. :-)

DebbieT

Thank you .... Unfortunately I've had an awful day but hey ho!! The group got me thru, bless them xxx

Agape

Oh DebbieT, so sorry to hear that you have had an awful day. It is so great to be able to chat with others and encourage one another.

I hope that tomorrow will be better for you. :-)

xx

DebbieT

Thank you

My psoriasis are in a massive flare & I lost my Dad a couple of weeks ago, it's an on going process!! But how right you are ... The help from members for my 2 threads today & over the weeks have helped keep me sane & being able to try & offer help/support to others does the same thing

This place is a true help!! xxx

Agape

Oh dear, I am so sorry to hear that you lost your dad, it's really hard isn't it. When I got stressed my psoriasis would creep higher and higher up my arm! Long sleeves can be a real blessing. Lol.

I do try to check in with new messages, but not sure that I am navigating this website properly as I didn't see your posts. I think I need to try working this site out better. :roll: