Frustrated! Seen the rumatologist twice but still no diagnosis. My GP believes I have RA but have still been given no treatment. I have consistent pain in hips, ankles, knees. Fingers at times along with like a cramping. Along with shoulder and lower back pain on occasions. Sometimes feel that I am walking on a stoney beach. Stiffness in the mornings or after sitting for a long time. Unable to take anti-inflamitories, on co-codamol or tramadol daily dependent on the severity of the pain. Rhumatologist started me on gabapentin 300mg at night 7 days ago but has not made any difference. I am tired, frustrated and just plain fed up, been off work now for 3 months and as a very independent person this is not helping me feel any better. No major flare-ups for approx 10 weeks now. Bloods have shown inflamation. What is the likelyhood that it is RA?
Lesley,
It's impossible to know whether you have RA or not as I'm not a medical professional and haven't examined you. If you feel that your current rheumatologist isn't giving you the attention you need, then certainly get a second opinion from another rheumatologist.
Your list of symptoms sound like they could be RA, but they could also indicate a variety of other diseases which are closely related.
It's interesting that you have been prescribed gabapentin (neurontin). I take this for nerve pain related to multiple sclerosis. This drug is not a long-lasting one which is way it is often taken 3x per day. But the reason you are taking it could differ greatly than mine. If you are using this for nerve pain, 300mg is at the low end of the dosage spectrum.
Talk to your doctor some more. Express your concerns. Ask if there is any other approach you can try to get the pain and inflammation under control.
Please let us know how it goes.
dear freind i had the same problems what the blood test inflimation is,that is symptoms of RA and be sure to see a gastrologist as soon as posible AND MAYBE YOU NEED TO DOBLE CHECK IF YOU HAVE CROHN'S DISEASE these are my symptems too , leave the rematalogist let him send you to the infusion center and make an appointment with a doctor at that department so you have to see infusion center dr, and a gastrologist do,'t forget to take a stomik pill protector cus of the madication you're on
if you need to call me my n# 626 3754327 , sam my be i can help you i've been SUFERING FOR FOUR YEARS AND I KNOW A LOT
your symptoms sound familiar, very familiar. However, I'm not a doctor, so I can't give you a positive diagnosis.
you have two options. The first one is to go back to the rheumatologist and ask some questions. To prepare for this, I'd recommend that you do some research about the basics of RA and the usual treatments for this (see this post from Dr. Mark about the different types of medication for RA).asking your doctor these types of questions can be difficult, so check out my post on how to be a good advocate for yourself for tips. You need a diagnosis and if you do have RA, you need treatment to suppress your RA and protect your joints. Gabapentin is a painkiller, not a drug that actually suppresses your RA.
your second option is a second opinion. RA can be hard to diagnose, especially in the beginning and it's not unusual for people to see several doctors before they find someone who will make a diagnosis. The good news is that your family doctor believes you have of RA, so you have them in your corner.
good luck! please let us know how things go?
It's so frustrating when you have to try one thing and then another, but it's often necessary in the beginning.
You might want to check out my post on working and RA - if you're living with a chronic illness or disability, you're entitled to accommodation in the workplace under the Americans with Disabilities Act. This means ways of making the job physically easier on you, while still allowing you to do the duties of the job. That post has links to the Job Accommodation Network where there are examples of different ways of accommodating people with different types of conditions, including RA. They also have staff available to help you work things out if you need it.
It's quite common to have a bit of a "hangover" in the beginning stages of taking certain drugs, including gabapentin, Lyrica, muscle relaxants, sleeping pills, etc. I take muscle relaxants at night and the first three weeks I was on the drug, I was a zombie. However, taking a smaller dose to begin with can make the process easier, then increasing the dose once you're used to the drug. As well, it usually abates after about three weeks. You may want to talk to your doctor about trying again if you pain continues to be unmanageable, either with gabapentin or Lyrica.
Some rheumatologists are comfortable prescribing low doses of prednisone, but some aren't. You've apparently found one of the latter. Perhaps that's another reason to seek a second opinion.
Keep us posted, please?
Just got home from seeing the rhumatologist again. I am now having to use a stick to walk. He has finaly diagnosed me!! Not with RA but with Fibromyalgia. OK the symptoms do mimic RA but When I questioned him about my swollen joints he stated well I havn't seen them!!!! Obviously my GP and I have been seeing things that are not there. lol. So although I have a diagnosis for all the pain I am in to me it still does not seem to fit all my symptoms. Ohh I must just let you know that I am living in the UK. Well I will be off to see my GP again when I get back from holiday in two weeks and who knows what will happen from there. I will keep you all informed and thanks for all your help.
What? That's nuts...
When you see your GP, ask for a referral to another rheumatologist. Unfortunately, sometimes you have to see more than one in order to get a diagnosis.
Just a little update. My employers recieved a medical report from my rhumie. lol. He stated that I do have Fibromyalgia but also said I have Juxta-artiular osteoporosis. This he did not state to me! Well will be seing my GP tomorrow and asking for a referral to another rhumie. Oh anyone know what the normal ESR rate is as he stated mine was 24?
I will let you know more tomorrow.
Glad to hear you're in the process of moving to someone else.
Check out our post on lab results for more information, as well as this page.
Thanks, Lene, just found out normal sed rate is 20. So mine being 24 3 months ago shows something is going on. I went to see my GP yesterday and he has referred me to cronic pain clinic, I have appt in 4 weeks time. He stated that if they are at all suspicious regarding the RA not being diagnosed then they will re-referr to rhumatology. NOT the same rhumie that I had seen previously. I also showed my GP the medical report given to my employers, he was not amused and signed me fit for work part time for the next two months, said if I had any problems with work then tell them to get intouch with him personaly. Thanks for all your help if there are any changes or new diagnosis I will let you know.
it convoluted, but it sounds as if it will ultimately get you what you need. Good luck!
Lesley -
I am not a doctor and cannot diagnose you, however you sound like you are experiencing what I first experienced when diagnosed with Fibromyalgia and then RA. I ran into the same problem with my first Rheumie in that he diagnosed Fibro first and, like you, I asked "what about my swollen joints". He then did the appropriate blood work, which showed the high inflamation levels, but not the RA Factor. So, after trying methotrexate and plaquenil for about 6 months with no effect, and also seeing a pain mangement doctor at the same time, I went to another rheumie who diagnosed me with Fibro and Poly-arthritis. Which means he is pretty sure it is RA, but nothing in the way of blood tests confirms it other than the inflamation.
So, this started 4 1/2 years ago and for about 1 year I was on Humira, stopping about 4 moths ago, and the Humira did help. Steroids helped too, but also caused me to gain 40 lbs in about 4 1/2 months....not HAPPY!!! But, I stopped the steroids, and have been off the Humira for 5 months now and I know that it was helping as my symptoms (Fatigue, joint pain in every joint, including my back, and joint swelling) have gotten worse. The problem is I have moved from Florida to Utah and can't get into a Rheumie until January 30th. So, in the meantime, I continue my Fibro meds and my pain meds, and try to find a job I can do with my conditions....not easy.
But, keep trying to find your answer. I have a friend who went 6 years of doctor after doctor trying to find her condition, only to find she has Lupus. So, don't give up, no one knows your body as well as you, and don't let them shut you down. You really do have to be your own advocate and make sure your doctors truly understand what you are going through every day. Good luck and feel free to contact me if you wish to discuss further.
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Thanks for the reply although it has taken a little time for me to get back to you. Just to give an update. My GP has had to increase pain relief and am now taking dihidrocodiene 30mg 4 to 6 hourly and tramadol 200mg slow release at night. I stopped taking the gabapentin after 3 weeks as it was not helping and just made me wake in the morning with a headache, (felt like I had a hangover every morning) Chance would be a fine thing....... I'm still experiencing flare ups in my ankles, knees and although no redness anmd swelling can be seen my hips are just killing me. I can not take any anti-inflamitory medication as I have a bad reaction to them. I was on prednisole for a chest infection which lasted for 4 weeks and this did help my joints but GPdoes not want to continue this and the rumie was not too pleased. I took the plunge and asked my GP if he would be happy for me to go back to work and he said go back part time and see how you feel. I have gone back 3 days week, leaving the tuesday and the thursday for me to rest inbetween, let me say that its only been 2 weeks but I realy do need those two days to rest. Obviously this has made my mental health better as not sitting around talking to the four walls but have I done the right thing? Anyway, I am back to see the rhumie in 3 weeks lets see what the outcome is. If he does nothing then I do have the name of another and will seek a second opinion. Oh I also have the pleasure of sciatica left side at the present. OHH HAPPY DAYS!