Hi everyone, I saw Rheumy consultant yesterday and he is at a loss as to what is going on with my hands. He says there's Osteo arthritis, but doesn't think the swelling, stiffness, pain and heat is Rheumatoid Arthritis. I have had two hand scans which show inflammation, but he says this is in the finger and not the joints. I had another x-Ray and he said he'd contact me if there is anything significant on them.
I have been on MTX, couldn't tolerate it, same goes for Sulphasalazine, I have been taking Hydroxychloroquine since September, no difference as of yet, he has now doubled these to 400mg a day. He wants to try Leflunomide, but I have rather high or erratic blood pressure even taking my meds, so he's not willing to do this unless my blood pressure can be better controlled.
The final thing he did say was that it is probably diabetic neuropathy and my fibromyalgia causing these symptoms. I was on 12.5 of pred over the Xmas period and they didn't do anything I have to slowly reduce them now back to 7.5. I have now succumbed to the dreaded flu virus and got a chest infection so now on antibiotics, feeling rough and can't stop coughing. See GP Monday to get some answers. Really fed up now, this has been going on for nearly 2 years now and got nowhere, but took loads of drugs which didn't work.
Sorry for the long post, just feeling lost as to what to do next.!!!!
Jan
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Titchyj
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Thanks for replying. Do you have swelling, pain and stiffness? The palms of my hands are red and very hot. I also get days when I can't bend my middle fingers on both hands. There is some tingling, heat, swelling and a lot of pain. Scans show inflammation, but I can't take NSAIDs due to Asthma and can't take strong pain meds. At my wits end at the moment as to what is going on.
Yes exactly the same i had an op on the middle finger and its made it really bad. The left hand is the same. I am the same as you with meds, i know its really painful, because tendons go thru the arms making them stiff and painful, with a constant burning pain.. my wrists hurt too. Sorry i cant help. Just wanted to let you know its pretty common with fibromyalgia and support you too by letting you know that i empathise.
Thank you for your reply, looks like I'll have to put up with it. Hoping doc can shed some light on things I can do. I'll let you know if he comes up with anything. Not very optimistic though.
Sorry you are feeling so unwell, I was told by my consultant that neuropathic pain is really difficult to treat I've tried so many meds over the years with little effect, with fibro also in the mix it makes treatment more complicated. All I can say is you must be very kind to yourself, rest as much as possible, I find meditation helpful it takes practice but is worth a try. I hope you feel as well as possible very soon. Lou xx
Thanks Lou60 for replying, think I will have to try anything on offer at the moment as they are getting worse. I was wondering if a lidocaine injection in the hand would help or something along those lines, just a thought.
Worth discussing with your GP, I have been to physio over the years they are helpful but all seem to have different ideas, I had wrist splints for a long time then I was seen by a different person who took them away. At the moment my fingers feel like they are swollen they're not, I do sympathise with you. Have you tried heat and massage. Best Wishes. Lou x
Yes Lou60, been to physio all she did was put my hands in a wax bath, which was nice at the time, but short lived. Told me to try ice and heat alternating, this helps whilst doing it, but again short lived. I have to run hot water on them in the mornings to get any sort of movement and they feel better in warm water even though they are hot all the time. Have tried my Tens Machine, couldn't stand the tingling at higher levels, but the lower ones helped slightly. The problem with all these is that you can't use them constantly, they are all short term relief.
Sorry to hear you are having a rough time. When we think of how much we use our hands and rely on them, it really can bring into focus how much using them can trigger pain. Each morning I can only bend my fingers towards the palms of my hands about quarter of the way. They feel swollen, stiff and painful. The middle joint is agony especially when I try to bend it and it kinda jumps out of joint. Aarrgh, it is like nails down a blackboard. Seems I can type as there is no need to bend the finger joints. Going to have a go at putting my tens machine on my hands to see if that makes a difference. If it does, I shall let you know. Be careful of anyone tries to shake your hand, as happened to me last week, the person squeeze my worst hand, yes..... right over the most painful joint of the most painful hand
Tried my Tens, it did help on low levels, but couldn't tolerate the higher levels. I agree hand shakes are very painful. The pain when trying to bend middle finger feels like it's going to snap or break excruciating to say the least. Hope you find the tens helps, thanks for your reply, hope you find something that helps.
Sometimes pain and stiffness in the hands can come from the shoulders - if you are stiff in your upper back and neck it can affect the nerve paths all the way down to your hands. I find that a visit to my osteopath and a good upper back massage helps with this.
Thanks Angelseven for replying, I do have muscle pain and soreness, (myofascial pain I believe it's called) across the shoulders and neck due to the Fibromyalgia, but the thought of anyone trying to massage them would be far too painful to withstand, even scratching in that area is painful. My fingers are also very swollen and the palms very hot.
I am really sorry to hear that - It is very hard to know what to do.
How about a really gentle aromatherapy massage? You could actually do it yourself. I have some wonderful bath/massage oil that has been made up for FM sufferers and also a gently muscle rub that is made by Dragonfly Organics (dragonflyorganics.co.uk/). All the products are freshly made to order and smell heavenly. Just the smell makes me feel better! If my skin is very sore all over (as it was this morning) I put a few drops of the oil in my bath and had a good soak, I then followed with the muscle rub on the worst bits and it made a real difference. I also have problems with my hands, but nowhere near as bad as you and find that it helps if I do the massage myself as the oil is absorbed into my hands.
Dragonfly also have a Facebook page and are really helpful. They are willing to add essential oils to suit you.
Thank you Jane for that link, I will certainly have a look at it. I have other medical problems that stop me from adding things to the bath especially if they are perfumed. I could still try the massage oils though and as you said do it myself, as I know what pressure I can tolerate, may even help with the hands.
Just a thought Jan - Dragonfly products are organic and not perfumed as such as they use essential oils - perhaps they could suggest something that would help your other conditions? I am a great believer in using natural remedies if possible.
Hi everyone I have to add my hands are terribly painful especially the ring finger on right hand. If that gets any worse I'm going to be in terrible trouble as I type for my work!
It's swolle at the edges horrible nodules both sides and the little finger next to it. You can actually see it.
The two other fingers next to it have started to turn inwards I really don't understand it at all.
Nothing the doctors can do. The Rheumatologist has discharge me back to my GP. No one wants to know. Agony if someone holds or tries to shake my hand.
Hi lottieonline, thanks for replying I know where your coming from, the doctors just not sure what to do unless they have concrete evidence via blood tests or scans etc., to corroborate what they think it may be.
Hope you get some answers soon that can help with your problems.
I am having horrendous pain in back of my hands and a different pain and stiffness in fingers. Got fibro, Raynaud's, lupus, rheumatoid arthritis and doctor does not know why I am having so much pain and stiffness. Sounds like fibro kicked in neuropthic pain so I just had test. Maybe they missing a diagnosis in you. I really hope you start feeling better soon. X
Hi Louiseelcross, I have Fibro, inflamation and swelling with pain In fingers, Osteo arthritis, diabetes and a few other ailments to boot. What tests have you just had for the neuropathic pain? The palms of my hands are red and very hot also the soles of my feet, get pain in toes and stiffness too.
Hope the results of your tests get you treatment for your pain.
Hi Titchy. I don't get hot hands but do get bad pain in back of hands when they get a bit cold and pain an stiffness in legs feet and big toe. Just had a nerve stress test in legs and arms. Not got results yet but hopefully it will explain. Doc says it sounds like neuropthic pain but don't explain why I can't walk. Not that knowing will make a difference . thanks for you response and I hope you have lovely evening. X
Thanks Louiseelcross for that info re the nerve test. I do hope they can do something to help you. As I have the flu and chest infection my evening is divided between inhailing Vicks vapours under a towel and violent coughing, but thanks for the thoughts of a lovely evening, maybe next week will be better, we can all hope for that.
Saw GP this morning, one good thing all blood tests were fine. Spoke about my Diabetes and he has upped the Gliclizide to 80mg a day, see how I get on with that over the next few weeks.
He hasn't received the Rheumatologists letter yet, but I told him what was said that he doesn't think its arthritis, but diabetic neuropathy and or my Fibro. Well my GP doesn't think it's either of them so is waiting for this letter and said that as the consultant upped the Hydroxychloroquine and is thinking of putting me on Lufflonmide (sp), there is nothing he can do as I am still under the care of the consultant. He agrees there's heat in the hands, swelling, pain and inflamation, but he said if tests were needed they should be actioned by the consultant.
I am not seeing the consultant for 9 months, so where do I go from here? I'm at a loss as to why my GP can't send me for tests himself, or is it all down to costs? He also told me that the Rheumatology Department at my Hospital is under a lot of pressure, so what, the whole of the NHS is, this surely shouldn't have any influence over whether you get tested for something or not. If these two medical professionals don't know what is causing my symptoms surely they should be sending me to see someone else who could possibly find an answer.
Sorry for the rant, but this has been on going for over 2 years now and nothing that has been done has helped. I know I have some weird ailments and intolerances to medications, but it is the 21st century and I would have thought there is something out there that could help or someone.
Hi my heart goes out to you. How about trying warm paraffin wax baths? You can get the bath and different kinds of the wax from Amazon (other outlets are available ). You should be able to try it first at a beauty salon or somewhere like that, or if you go on line you can find out your nearest therapist, and you never know they might even do home visits, mine does. Hope it works, it won't cure the problem but it might just give you the ease that your craving. Good luck, huge hugs. S xx
Thank you Sukest, I have had this done at Physio, it was ok, but my hands are so hot the heat from the wax as well made them tingle even more. It was a nice feeling for a short time, but I don't think it's the answer for my problem. I've tried ice too and it melts so quickly because of the heat and the cold causes more pain. I'm really at a loss as to what to try now. The only thing that gets my fingers going in the morning is warm, not hot, water from the tap.
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