Joolsg will be along to advise you on your new diagnosis so I will just address your RLS and pregabalin. I'm assuming your RLS isn't under control. Am I correct? Don't be afraid of the side effects of pregabalin. Most of the side effects of pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. if you take calcium don't take it within 2 hours. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily."
I notice that your ferritin 9 months ago was 24.6. That is very low. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. take 325 mg of ferrous sulfate or 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium or calcium take them at least 2 hours apart since they interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take you iron at night. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your thyroid medicine within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months . When you have your test ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers (I didn't see that on your last test results). You want your transferrin saturation to be over 20% but less than 45%.
Again assuming your RLS isn't under control: some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
There really is no reason to be scared of the side effects then. All drugs can have side effects and if one reads the prescription leaflet that comes with them that lists the possible side effects one could easily be scared and never take any medicines. If you do have ones that you can't live with you can always come off it. And it can control your RLS. I take pregabalin switching off with gabapentin which is basically the same drug and have no bad side effects, just a couple of minor ones that don't bother me. Afterall, nothing venture, nothing gained. And as Joolsg said it helps with MS. I do hope you change your mind as I hate to think of you suffering .
It can take a while to get over the shock of diagnosis. I hope you have a support network in place.
Pregabalin is fine for both RLS and MS. It works well on MS nerve pain. I have MS & RLS and also have all those symptoms.As it's Progressive, have they offered you Ocrevus? A few of my fellow MS friends with SPMS and PPMS are on it. One also takes Siponimid, which is at Bart's hospital under the trial.
You may also want to try medical cannabis. It is excellent for severe MS pain and spasms.
Hi Joolsg, Thank you for replying-to me. Hope you're not suffering too much. I have decided not to take the Pregabalin as there are too many side effects.
I can honestly say that I can handle all the MS symptoms EXCEPT RLS!.If the side effects of pregabalin scare you, what will you take for the nerve pain?
I would recommend medical cannabis. It really helps nerve pain & spasms.
Hi Joolsg, I hope you're not suffering too much. My GP will not give me any other medication until I have had all my MS tests done, I'm now being referred to Addenbrooks Hospital in Cambridge for for nerve conduction tests and more MRI scans of my back, neck and brain. Thank you for all the concern and support, very much appreciated.
I have found from personal experience that all the NHS professionals are so lackadaisical and DO NOT offer much support, except Antidepressants, which I DO NOT WANT!!!!!!
Anti depressants worsen RLS.Addenbrookes is good for MS (except recently there are terrible delays, as in all NHS hospitals). My sister is treated there for her MS.
Your GP should be helping your RLS regardless of the wait for MS treatment. MS neurologists aren't very good on RLS treatment, even though 30% of MS patients also have RLS.
Our symptoms are not usually caused by low brain iron but by spinal cord lesions & damage to the brain.
If you can cope with your RLS symptoms before you get the test results back, then fine. But if you have severe RLS every night and can't sleep, you may have to push for RLS treatment now. It will not affect your MS treatment in the slightest.
My MS is stable at the moment and my RLS is completely controlled by low dose Buprenorphine.
I found pregabalin helpful for neuropathic pain and anxiety although ultimately I decided to come off it again and live with some discomfort. It can have some side effects e.g. weight gain or edema (fluid retention) and in my case it caused a very slight issue with remembering words and the flow of conversations but overall it was helpful and gave me a break from the things that were worrying me. If you did get side effects that you were unhappy with then it is normally not too difficult to stop taking it either, I found it best to reduce in increments over a few weeks or more so you can get used to the changes.
I am taking pregabalin for nerve pain in my neck can you tell me how long did it take you to get off it and what you take now for the nerve pain relief please
Hi, it’s a few years ago now but I took several months to get off it completely. I was taking 4 x 75mg tablets a day so I reduced by one tablet at a time and left it at least two weeks to stabilise and work out what the effects and changes really were. I didn’t want to go too fast and end up with worrying sensations and then having to go back up again although that was always the fallback if I felt uncomfortable. After reducing by two tablets a day I paused because I was going on a walking trip and which would increase my exercise and effort substantially so I wanted to keep the anti-anxiety effect and also some pain relief in case things flared up. At that point the benefits had reduced a bit but I was managing ok. The walking trip was fine but then it was Christmas so I decided not to add any stress by reducing further and made the next 1 tablet reduction in January and then in February started taking it alternate days and was completely off by April. It was probably quite a lot slower than necessary but let me get used to the changes without any pressure. I don’t take anything for pain now because my back has improved and after a few years I understand my limits and rarely overdo it. I did feel a little anxious initially after stopping but things like meditation helped and now I’m reasonably calm about it all.
Good morning lovely to meet and sorry to hear about your problems. I have been prescribed Gabipentin for nerve pain caused by abdominal adhesions and when I lie down at night and sit for long periods feel extreme chronic pain. My nights are a nightmare of waking up etc but it is now ruining my life so thinking of taking it for few months. BW Lally
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