Hit with a double whammy.....

mellivenelli

Hello everyone

Just wondered if there is anyone on the forum that has had a diagnosis of Seronegative Inflammatory arthritis and Hypermobility Syndrome?

I was diagnosed with both yesterday by a Rheumatologist and feel a bit shell shocked. I had a steroid injection straight after my consultation as he recommended it and I'm being started on Hydroxychloroquine. He's started me on it once daily as i'm a bit sensitive and suffer from multiple allergies.

He's not sure whether my horrid pain is due to the Arthritis or the Hypermobility Syndrome so i'm a bit scared of the meds but then again I don't want to end up with joint damage.

I had a hip replacement 14 weeks ago due to Osteoarthritis and I also have Degenerative Disc Disease, 2 prolapsed discs and Facet Joint Degeneration.

Is anyone else in the same boat with both conditions? How do you cope?

Thank you for listening xx

dreamdaisy

Hello, yes that must have been a shock (I've had those too in my arthritic life) and they do take one aback. There are one or two on here who have hypermobility plus an auto-immune so I hope they spot your post and reply. I wish you well. DD

Mat48

Sorry you've had a double whammy after what looks like a bad time generally. I only have RA and Hypothyroidism diagnosed but am on Hydroxichloraquine (400mg same as you) presently and have a long history of allergies. We all respond to these drugs differently but I can at least say that Hydroxy is the one DMARD I have taken that hasn't given me any problems to date. Take care and good luck. Mat x

villier

Hi

Sorry I cannot be of much use as it is OA and a rare neurological condition I have, I just want to be supportive, hopefully someone will come along to hep you........take care...................Mare x

cherrybim

Hello Mellivenelli,

It is indeed a shock when yet another diagnosis, or two, is added to the pot but please don't despair.

I have RA (which in my long experience) is always lumped together with seronegative as far as treatment is concerned. I also have hypermobile joints, which I've been conscious of since a child. I can score the whole shooting match on both the Brighton and the Beighton scoring systems.

However, for me my hypermobility has been an absolute blessing, even though my Rheumy says "that's half the trouble" I did have to be careful not to overextend when I had a THR, (even at 69 I can still put the palms of my hands flat on the floor) That was an added bonus when I had a second TKR some 15 weeks ago

I urge you not to panic and G....e like mad, read a sensible site like http://hypermobility.org/. I think you would already know if you were suffering from the far more serious Erlers Danlos Syndrome because you would have had many warnings of that before now.

For my own part in some ways I don't really think twice about the RA. I've been most fortunate. It first surfaced when I was 34. I was hospitalized for 3 weeks, treated with gold and other drugs which have since been banned :? After 3 years I went into remission which remained until I was 50. These days there's so much more in the armoury to help peeps. I'm now on Embrel, having tried methotrexate, sulphazalazine and Cimzia, I can't say it's perfect but it'll do

I'm no oracle but if I can comfort you in any way with my experiences please say

Take good care and please try not to worry, it could well be that your Rheumy was in fact meaning that your joints were 'flexible' rather than hypermobile. However, how should I know, I wasn't there :oops:

Cherry x

barbara12

Hello mellivenelli
Of course you are in shock its so much to take in..we go along to these appointments not knowing what to think..
So sorry I cant help but I see that Cherry has given you some good advise...I am glad you have joined us we all like to support one another so you now have us to talk to, and believe me it does help.x

mellivenelli

Hi everyone thank you so much for your kind words!

I was a bit concerned so the Consultant called me and we talked for about 20 minutes and tried to allay my fears about the hydroxychlorouquine and other stuff that I'd been so polaxed by I had forgot to mention!

I have definteley got the syndrome and have had other symptoms for quite a while which cross into Ehlers-Danlos Hypermobility (pelvic prolapse, Pre term delivery last baby, poor response to local anaesthetic and pain killers, gastrointestinal problems as well as painful and troublesome periods, frequent chest pain, palpitations and dizziness to name but a few) type so am a bit worried how it's all going to pan out but will just have to be brave and tackle it all head on.

My physio referral letter came through yesterday and im back to see my Ortho Surgeon following my THR this week for a review. Also have to have special shoe alterations done next week as my pelvis and spine got twisted during my THR and i have a leg length discrepancy of 3cm (which is when they realised something else was going on with me).

I have to be ok. I NEED to be ok. I won't let this overcome me.

Thank you for your help xx

dreamdaisy

It may be time for you to redefine 'OK'. My current 'OK' is totally different from the version I had two, five, ten and fifteen years ago and is completely foreign to my husband who has a 'normal' OK. (And therefore doesn't appreciate it.)

I recently had my hair cut by a lass with Elhler Danloss - she is double-jointed all over the shop and I noticed because her 'scissor hand' fingers were bent at very strange angles to keep them out of the way. I have not had hydroxy but I know it is one of the standard entry meds, some on here take it and it can help. DD

cherrybim

You have my total admiration Mellivenelli for being so upbeat and positive, well done you

My next door neighbour has Ehlers Danlos, she's now 53 and it was diagnosed whilst she was a nurse in the Army, serving in Germany some 30 odd years ago.

I feel that my RA absolutely pales into complete insignificance compared with her problems. Nevertheless she is a very determined gal, just like you. I've been chatting to her in the kitchen when suddenly, for example, her ankle joint sublaxes. :shock: She just wrestles with it, slots it back into place and off she chats again.

She has a full time job as an admin peep for our local hospital. Yesterday she went back to work after having had an op for an anal prolapse 16 weeks ago.

Please don't think for one moment that I'm suggesting that might happen to you :oops: I'm trying to illustrate how on the one hand I'm whinging about RA and my friend is certainly made of sterner stuff, as are you.

Do make sure that you get help with any neccessary aids. It's quite a joke between us that if I've got grab handles the therapist visits her and orders up the same and vice versa.

I do hope that I might have been able to demonstrate to you that 'all isn't lost' with your diagnosis for I've seen first hand how Ehlers Danlos can be coped with and I feel very small that I've only got hypermobile joints RA,OA and FM

Cherry x

stickywicket

mellivenelli wrote:

I have to be ok. I NEED to be ok. I won't let this overcome me.

I don't know what your definition of 'OK' is. As DD has suggested, it needs to be relatively fluid rather than rigid. But I'm sure you won't let it overcome you because you don't sound like someone who will let it. Allow it to win the small battles so that you can win the big ones.

Cherrybim, what a lovely, positive, sensitive post! That's briightened my morning. Thank you.

mellivenelli

Thank you again everyone!

Cherry thank you for your inspiring post!

I'm still feeling a bit overwhelmed by it all and i'm facing some decisions that are tough with regards to my career. I've been off work for a year now and was struggling before as its such a physical role that I was back and forwards and off sick lots. I think they will sack me but i feel that is not a negative thing and I'll just be cast off on a different path. The path I'm supposed to take will come to me i suppose but i have absolutely no clue what I will do in the future.

I have had a few tears over the weekend but I know what will be will be. I am scared. I know it will be hard and it will get a lot worse.

As for being 'ok' and defining what that is for me I think being ok will not be perfect by any means and i'll be back and forward and in pain and discomfort but I will have those I love around me to cherish and help me through the bad times. I know i will struggle. I know i'll be in pain. I know ther will be many times that i think my life sucks. But I have my family and friends to help me through. That's all i need.

xxx

stickywicket

More than ever, I think you will cope. You sound strong with good priorities. We will help in any way we can. (((())))

cherrybim

Of course we will as Sticky says, totally unreservedly and if you'd like to be put in touch with my friend who would be a good 'guru' ; no probs
Cherryx

dreamdaisy

You sound as though you have a very good handle on this and I laud you. I went for my routine bloods this morning and a bloke wandered in wearing a Tshirt which said 'I used to have a handle on life but it broke.' How very true and what we have to do is repair said handle; that is easier said than done, no?

I wish you well. DD