Mu doctor has at last done some blood tests, as he is thinking I may have RA as well as RLS, and I have very low folic acid levels, he is prescribing some for me, so hopefully this will help.
I started the RLS very suddenly 24/7 back in April and he said I had extremely severe symptoms.
Since then I have had all sorts of symptoms ranging from severe headaches and vertigo, muscle Pain, and most recently swollen joints both sides that are really painful.
Because I do not have the markers in my blood for RA,, he thinks that the RLS is causing this, but I have never heard of this, and can't find anything on line, anybody else get really bad hot and swollen joints particularly in fingers wrists elbows shoulders toes knees?
Last summer 2011, I had an appointment with a Rheum Consultant who said I had classic Fibromyalgia. Bloods are normal and xrays of hips, knees and shoulder is normal. Xray shows degeneration at the top of the spine and in the lumbar area. But 'normal' where I have the worst pain which is hips and knees. Earlier this year it was fingers elbows and hands. They are still sore but not so bad. Now it is knees and hips. All of these pains have been ongoing for many years but in the last couple of years have gotten to the stage of really needing attention. I take tramadol and codeine for rls (also requip) but they don't seem to ease the joint pain.
Today GP is at a loss and also thinks it is not cartilage so suggested referring me back to the Rheum Consultant. Last appointment on the NHS took 14 months waiting list, so today I asked for a private consultation and got an appointment for 5 September which is less than a week, cost of £150 plus any tests. I will take recent bloods and xrays from GP to save on costs. If an ultrasound is done that will be another £50.
In my opinion I don't think my RLS which I've had for 30+ years has anything to do with my joint pain.
thank you for replying, and my condition sounds very similar to yours! even down to the back problems!
My GP is very good and says that there are many forms of arthritis and is determined to get to the bottom of this, I just wanted to clarify that RLS does not cause the joint pains and swelling.
I will ask to see a Rheumtologist, my GP has already mentioned it.
Cazx
I have RA...It takes some time to find a biological medicine that will
work out perfect for you and very much lessen the pain, swelling.
RA and the medicines that I take for RA left me with several vitamin
and mineral deficiencies. We are always checking those levels now
and I am prescribed accordingly.
Lack of sleep, stress, worry does play into headaches, more severe
body aches, vertigo...RLS plays into Lack of sleep. He's probably
totally right, unfortunately.
What are you doing about RLS?
Are you on any Medicines for RA yet?
Quite a few are septa -negative for RA, yet they have every single
symptom including the deformities that go with RA...so...with that
being said, He may still treat you as if...Also you may have one
of many forms of inflammatory arthritis that just falls under the
category of RA...it's treated as RA just the same.
You may want to browse "Other Categories" for RA..see above
for "My Communities" since this panel is really focusing on
RLS. I think that there are at least 2 people on this panel
that belong to the RA community. =)
Welcome to this Restless Leg Community...Keep checking back
for new posts several times a week. The support that you have
here is excellent and we learn a lot through each other. =)
Karen ~Wisconsin, USA.
• in reply to
Thank you Karen for your reply, it is so helpful, and I have joined the RA site too now.
It does seem as if there is something going on, and it has happened so fast I just sat down one evening and wham, Severe RLS!
I take Pramipexole for it, 5 x 0.088 tabs a day,and also Tramadol for pain, although the painkillers do nothing for my pain, they do help control the RLS thank goodness, as I just do not know what I would do other wise, as within 2 weeks it had spread to my whole body and night and day!
I am very happy to have found this site as I knew absolutely nothing about any of this before!
Thanks again, Cazx
As far as i know RLS doesnt cause joint pain, or swollen hot joints. RLS can be painful for some people, including me, but it is usually painful calves that seem to relate to RLS.
So i think you have something else going on with your joints etc. but its not caused by RLS.
• in reply to
Thank you Elisse, you have confirmed what I felt myself, and I do get muscular pain all over the place especially calves and thighs. I agree with you about the joints, so will just have to keep going until I hopefully find the answer, luckily I have an excellent GP. who is so kind and understanding, so I feel reassured there.
RA does not have anything to so directly with RLS. RLS is neurological, so arthritis is defintely not neurological. As much as we would like to blame RLS for everything, we just can't. That is very strange about the swollen knuckles, if you truly do not have any markers for RA. They usually do an RA test when they are ruling things out, if they are doig their job right, and it sounds as if your doctor is trying to cover the bases. YOu said your RLS started suddenly. That is a huge clue, though! did you start ANY new meds around that time, prescription or over the counter, and that includes allergy meds, sleep meds, antidepressants, anti nauea meds, bladder control meds, etc. There are so many that can set off RLS, and it is rare it starts suddenly like that wthout a reason.
HI Nightdancer, yes it did start suddenly and severely. I have wondered about the Amytryptilene, I only took it for a month as it made feel ill, but the RLS stated about a month later, I have high hopes that getting the Folic acid levels right may help me reduce my medication as I am on a very high dose of Pramipexole, that and the Tramadol only just controls the RLS.
MY GP is thinking of sending me to Rheumatology, as he said there are many types of artritis.
I had also just come off of my antidepressants after 4 years, had my pain medication changed, and had been taken off Celebrex too.
Thank goodness I refused to have my HRT changed because as you say this was probably what started all this off combined with the very low Folic acid levels
I really just wanted to check that the joint pain was unlikely to be to do with either RLS or possible Fibromyalgia.
Thanks again for your help, Cazx
• in reply to
It sounds as if it was the Amytriptiline that has triggered the RLS off. That med has been known to cause problems and can also make RLS worse,
• in reply to
I think you are probably right, and also the Folic acid thing too, as I have been feeling exhausted with muscle pain and dizzy spells for about a year!
I did not even realise that you could have anaemia from low folic acid!
I am just glad I read this somewhere that RLS can be to do with low levels of it, and asked him for a test!
Keep talking to your Rhuemy.. I think that he/she deals with this RLS and
RA thing hand and hand. Like I said, only 80% of all RA patients have
RA Markers in their blood. There are so many different types of RA.
Try to focus on the symptoms, not the name because you are with the right
doctor for swollen, painful joints. That in itself can keep you awake.
I get loopy just taking 3 of the Pramipexole at your dose. Usually it's the
next day that suffers a 'hangover' feeling. I'm having less luck with the meds
as of 2 nights ago. My legs want to run, move, twitch, kick, lift, jump.
• in reply to
I have not been referred to a rheumy yet, this is my GP treating me at present, but he said he will send me if things don't improve, so I will push for that, as I am now getting breakthrough symptoms, so even at this high dose the meds are not working!
Thank you for your help, Best wishes Cazx
Caz...I'm so sorry that you are having a rough go...
I have high hopes for you.
Living in that kind of pain and suffering with joints that are misbehaving
is terrible, just terrible. There is no excuse for that kind of suffering in
this day and age of modern medicines. = /.
A Kenalog Shot (Steroids) in the arm muscle was my short answer.
It wiped out the pain and swelling in a few days. You are allowed
up to 3 shots a year. It takes it away for 3 to 4 months for me.
Good Luck n take care,
Karen
• in reply to
Thanks Karen, I have no clue about the meds yet, but I will no doubt find out more soon. I really am grateful to you for your help. it helps so much to not feel alone!
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