Have no idea what arthritis I have and so far doctors/consultants have been so bad with me help!

Jewels1973

Hi to everybody on here I’m a newbie to all this. I don’t like to say doctors have been useless with me but they have. Potted history March 2022 felt like I had broken both my wrists & been stretched on a rack. Went to the doctors he immediately said inflammatory arthritis we need to get you seen by a Consultant to get you on some tablets. I suffer from anxiety (mum died 8 years ago) so I thought it would be quicker to go privately how wrong I was. First and only Rheumatology Appt with a Sophia Khan didn’t even examine me. Literally didn’t put her hands on me said oh I think it’s going to be your diabetes what I’ve found out now is that it’s not that & I’ve lost 4 stone since 2018 I’m still curvy I have PCOS and going through menopause plus I have M.E. I sound great don’t I! Anyway results came back negative for rheumatoid arthritis she didn’t even want to see me again! Earlier this year I found out on my blood test my inflammatory markers are high. All she told me to do was use hand wax baths which I have religiously done since October 2022 every day. I told her at the time my hands hurt like hell, my wrists hurt and my knees and my ankles and my back. My own doctor put me on Tramadol and Co Codamol plus full dose of nurofen every day. I went to a private physio attached to her they saw me for 2 months then said oh you have a hand wax bath at home there’s no point coming to us. Then out of nowhere they wanted me to see a Hand Specialist again I told him that my pain was everywhere and had suddenly come on. His response was well let’s do some x rays on you and an MRI of your right wrist. I was in there maybe 10 mins. Family matters prevented me from getting the MRI scan till June (my dad had to have a cervical laminectomy & it was so serious they thought he might be paralysed from the neck down thankfully he’s making a recovery). So I’m now waiting for the 12th July when I go back and see this hand consultant. I’ve been signed off work this whole time. I cannot hardly move in the morning I’m so stiff I do all my hand exercises but I’m in such a lot of pain and I know you all must be too so I’m really not going oh poor me. I have pain all day despite taking the tablets. I have to come up to my room by about 5pm as my legs won’t carry me up the stairs. I’ve had them say you have lymphodema in your hands (I don’t as I went to see the lovely ladies at St Giles Hospice) I do have it in my legs but I’ve had that since 2009 and there has been no bad progression in my legs in fact the really good Lymphodema nurse said how well I look after my legs. I’m sorry I have rambled. This hand consultant when I saw him said oh we will probably give you an injection in your thumb. I’ve sent him messages telling him it’s everywhere in my body the pain but nobody seems to see beyond my hands. I’m 49 and I feel 89. I want to get back to work I run my own secretarial business this has taken me ages to type as I can now only use one finger to type on an iPad. Could anyone give me any advice as to do you think I need to see another Rheumatologist? I wish I had gone NHS. Does this sound like Rheumatoid Arthritis my friend has it and I think my NHS doctor thought it was RA because he put on the form initially DDMARDS sorry if that’s the wrong spelling. I don’t want him injecting me in one thumb when all my joints are in pain. I obviously don’t want it to be RA but if it is I’m prepared to have tablets & I just want someone to treat me properly and actually listen to me. I’m taking my brother into the appt as I sometimes find it hard to grasp my words because of my ME. Anyone in the same boat? Or have been? Or any general help of any kind would be so greatly appreciated 🙏. Thank you so much for listening anyone that reads this and I do ramble I know that so you are brilliant if you’ve read this all. Thank you & I really hope you aren’t in desperate pain today. Julie xxx Btw my grandad had osteoarthritis in his 50s and my Grandma on the other side of my family had osteoarthritis from 70 onwards didn’t know if this helps!

CarylW

Hello @Jewels1973

I am glad you have found our online community. We are a friendly and supportive group. I understand that you are looking for advice on how to help with your pain and also to chat with others in similar situations. You have come to the right place as lots of people on here will understand what you are going through and be happy to chat about it. We have all been through similar. It might be worth having a look at our website as well, it contains lots of info on arthritis, treatments, hints and tips. I've put a couple of links in below which I hope are of some use.

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

https://www.versusarthritis.org/about-arthritis/conditions/arthritis/

Please do keep posting and let us know how you are getting on.

Best wishes

Caryl

Jewels1973

Thank you Caryl for posting this information I’m really grateful. I will keep posting sorry the first one was a bit long I just needed to explain what was going on. I think I’ve got to realise it’s my body I’m in charge of it and not be forced into injections that might not be the best for me. Seeing as I have ME which is an autoimmune condition it might be likely that I might have an autoimmune condition to do with my joints. I also get shingles a lot. I eat well and take vitamins. Think my brother going into the appt with me might be a good decision as I did feel very rushed by the Consultant and a physio that had never seen me mentioned menopause I’m taking what she suggested have done for over 3 months but if anything I’m in more pain. Fingers crossed (well I can’t cross my fingers)! that something shows up when I see him. Sorry that was a bit rambly again. Thanks to anyone that has looked at my post and I will definitely be looking through other peoples first posts. Thanks again. X

stickywicket

Hi @Jewels1973 . You've been through a lot and I can understand your anxiety. It's always a good plan to take a second pair of ears (in your case your brother) to an important appointment so well done on that.

I'm sure no-one will force you to have an injection you don't want but I'd doubt that a hand specialist would give you a depo jab because (and I could be wrong) I don't think they deal with autoimmune forms of arthritis and the depo jabs are only suitable for autoimmune types.

I've read your post carefully but it seems the only person who has suggested RA is your GP. The rheumatologist you saw (by the way, we are not allowed to name names) thought OA so, if you really want to seek a second opinion then, yes, I'd see an NHS rheumatologist or, at least, go back to your GP and ask why he thought RA and what exactly the consultant wrote. I find GPs can often clarify things.

Two things might help.1. Rheumatologists can tell far more from blood tests and x-rays than from just looking and 2. Many things can raise our inflammatory levels, not just inflammatory arthritis. I believe diabetes is one.

You're in an unenviable position. Certainly, OA can progress quickly for some in multiple joints but a rheumatologist can tell the difference between OA damage and RA damage so, again, I'd say it might be worth a second opinion.

Re shingles - it's very unusual to get it more than once but, if you keep getting it, why not have the jab? I've just had part one of my shingrix one ie the one that those of us who are immunosuppressed can have.

Anyway, good luck and do keep us all in the loop.

P.S. I have RA and OA.

Jewels1973

@stickywicket Thank you so much for responding oh gosh I didn’t realise that we aren’t allowed to name names on here I will remember not to do that on any further post. Thank you for all that great advice I thought taking my brother in might be a good idea. I think a second opinion might be the way forward as you said. I have consulted another private GP and she said that it might be worth a second opinion. I’m going to have to go and see the hand specialist anyway but that’s good to know that he can’t do those sort of injections. With the shingles I first started having it when my mum passed away I’m on a maintenance dose of acliovir for it but they still tend to get through unfortunately. I’m not sure whether you are based in the UK but my doctor told me that you can only have the shingles vaccine once and he thought I was too young to take it I’m 49. He said it’s better to have it when you are 70 when it can really debilitate you. I know I’ve looked into the injection and I don’t think UK citizens can have it anyway till they are 50 and then only in exceptional cases. My doctor might be wrong I can’t get to see him. It takes weeks to see him. If I have a shingles flare up that’s the only time I get to talk to him because he’s always told me to ring him as soon as I get them and then he ups my dose to 4000mg of Acliovir a day (maintenance dose is 1200mg a day). Thank you everso much for your good wishes and I will keep you all in the loop as to what happens. I’m in agreement I think I do need to see another Rheumatologist a good one this time so he or she can look at me properly. You are very kind thank you x

Jewels1973

Hope you all don’t mind me sharing what happened today. I went to a Hand Consultant after having x rays and an mri done on just my right hand I had told the Consultant my pain was in all my joints at my last visit to him I’m not sure he took this in. Thankfully he said you haven’t broken your wrist and you don’t have any nodules. I was pleased about that. He then asked me again where in my hands the pain was and I repeated to him it’s not just in my hands and fingers it’s in every single joint. He looked quite surprised. I had not only told him in the previous appt about the pain being in all my joints I had done a comprehensive history of how things had started occurring to me. He is a nice Consultant very chatty. He then said to me well there’s no point in me giving you any injections because there isn’t a specific place you are in pain there are lots of places. He had mentioned injections at my previous appt. I took my brother in with me because I suffer quite badly from brain fog & didn’t want to miss anything. So I enquired you didn’t find anything? His reply was well there’s wear and tear in your wrists and hands (I’m 49 by the way). I asked him what this meant did he mean I had arthritis and he then after me asking said yes. I was in there for less than 10 minutes he asked me to do a few things with my hands. He now wants me to go back to the doctor Physiotherapteam that actually said there’s nothing more we can do for you & had referred me on to the Consultant. Of course I will do this .I’m paying privately for all of this btw. The physio who was in the room last time wasn’t there this time. So he is writing to the physio dept they are in the same hospital for me to get more physio appts. The lady physio had previously said to me I had osteoarthritis and lymphodema, I haven’t got lymphodema in my hands I have in my legs and I have talked to a Lymphodema Nurse who examined my hands and said that’s definitely not lymphodema. Also he is now sending me to see a Pain Consultant one that his mother uses it’s just down the road from me. What I can’t understand is that I’ve twice told him the pain is in all my joints, I told him a private doctor I had spoken to thought it might be a good idea to have a second opinion from another Rheumatologist, he said I could do that but he wants me to see this Pain Consultant who I will gladly see as I’m in so much pain I could cry a lot of the time. Has anyone had a referral to a Pain Consultant without actually having a diagnosis of really anything. My doctor thought I had rheumatoid arthritis, the tests came back negative but one caof the inflammation markers I think they call it ESDR?? Came back high shoeing there was quite a lot of inflammation in my body. He’s not ordered anymore blood tests maybe the Pain Consultant might? So basically he said he doesn’t need to see me again so I feel a bit like I’m back to square one I was doing hand baths with this physio and I do them daily at home. I’m just a bit surprised about the course of action he wants to take I would think you would need a diagnosis of something to be referred like this. The man I am seeing does deal with fibromyalgia I have had ME since I was 24 but he deals with well I’m not sure. I’ve not heard of a Pain Consultant. I’m all for trying anything to help my pain I was just wondering if this had happened to anyone or if anyone had any views on it. Sorry that was so long! Really any views or help or have you been in any kind of position like this. Thanks 🙏 everyone snd hope you sre all in not too much pain today. Julie x

Janelle23

I'm in a very similar situation to yourself I'm going round in circles I have t2 diabetes n have been getting pain in my hand since Nov 22 to the point where I can't use it now I also get pain down my legs n feet doc thinks it's arthritis but arthritis consultant said it may b t do with my diabetes which they can't do nothing about waiting t be referred again bk to consultant as not getting any answers hope u get the answers you need

noddingtonpete

Hello @Janelle23 and welcome to the Community. We are a friendly and supportive group and I hope that will be your experience as well.

I understand that you have pain in your hands and legs and waiting to see if it is arthritis. Have a look at the following from our website as it might help.

https://www.versusarthritis.org/about-arthritis/conditions/hand-and-wrist-pain/

and

https://www.versusarthritis.org/about-arthritis/conditions/arthritis/

Please keep posting and let us know how you are getting on and I am sure that others will connect with you to share their support and experiences as well.

With best wishes,

Peter (moderator)

Jewels1973

@Janelle23 Thank you so much for responding I have Type 2 diabetes as well and exactly the same with me. My HBAC test came back half of what it was at the beginning I went to see my Diabetes Team and they were convinced it wasn’t that as I had halved my diabetes and lost 4 stone since 2018. The diabetic nurse took one look at my hands and said those are arthritic hands not diabetic hands. I really hope you don’t have to keep waiting too long for them to diagnose you. I literally feel your pain. I really hope you get the diagnosis you need it’s like you said we get pushed round in circles. Love sent to you. Julie x