I would certainly point you in the direction of a physician on this one. If you were to get suggestions here that may lead you to a position when your making requests to a Dr, which is a big red flag. The last thing you want to do is walk in and start rattling off your own suggestions for pain meds/management.
Absolute best bet is to tell a Dr what you're going through and let them make the suggestions, then you can go from their with their cooperation rather than just leave empty handed. Hope this helps.
I'm certainly not a doctor, so my advice is per my personal experience only.
I have had MS for 4 years and for the last year have been dealing with chronic hip pain as a result of a lasting symptom after a bad exacerbation.
I am currently on a medication for nerve pain, which is Cymbalta. And I also take a daily muscle relaxer.
So if you feel you doctor does not have the knowledge or cannot help you with your MS and associated pain, you should look into finding a new doctor. Because your MS is going to be with you for the rest of your life you should find someone that you are comfortable with giving you long term care.
I am sure you have been doing research. But just in case, you really do need to have a doctor following you. I would seek a neurologist to start. Do you have your medical records? You would want your new doctor brought up to speed as quickly as possible so make sure you get your medical records.
Start a journal if you don't have one and list things that have worked or helped you manage flares. Definitely list those things that you have been prescribed. You do need to be proactive in your care so doing nothing could be causing you more harm than just frustration. I know this is hard but stopping your meds because they didn't help maybe one of the reasons your symptoms have been exacerbated through the nerve receptors that are being attacked.
Again, finding a good doctor is paramount. You will need a doctor any way to prescribe whatever meds you might want to try after doing your own research. I found the following information for you concerning meds being used to slow down the progression of MS
Medications used to slow the progression of multiple sclerosis are taken on a long-term basis, they include:
"Interferons (Avonex, Betaseron, or Rebif), glatiramer acetate
(Copaxone), mitoxantrone (Novantrone), and natalizumab (Tysabri)
Fingolimod (Gilenya ),
Methotrexate, azathioprine (Imuran), intravenous immunoglobulin (IVIg)
and cyclophosphamide (Cytoxan) may also be used if the above drugs
are not working well
Steroids may be used to decrease the severity of attacks.
Medications to control symptoms may include:
Medicines to reduce muscle spasms such as Lioresal (Baclofen),
tizanidine (Zanaflex), or a benzodiazepine cholinergic medications to
reduce urinary problems.
Antidepressants for mood or behavior symptoms
Amantadine for fatigue
For more information see:
The following may also be helpful for people with MS:
Physical therapy, speech therapy, occupational therapy, and support
Assistive devices, such as wheelchairs, bed lifts, shower chairs, walkers,
and wall bars
A planned exercise program early in the course of the disorder
A healthy lifestyle, with good nutrition and enough rest and relaxation
Avoiding fatigue, stress, temperature extremes, and illness
Changes in what you eat or drink if there are swallowing problems
Making changes around the home to prevent falls
Household changes to ensure safety and ease in moving around the
home are often needed."
You may be aware of these things already but I thought they might be worth repeating. I don't know what you have tried or what you are currently doing to help in your day-to-day life. There is a lot to do here because you are frustrated and that comes through. I would be, too. And, please keep pushing forward and continue doing the research.
I have heard that aquatherapy can be beneficial for all types of physical issues... even MS because it is "gentle" movement and very easy on the joints. I do aquatherapy and it is also relaxing, peaceful and not painful for me. When you say you have tried "everything"; I'm afraid I don't know what that means... there is so much out there to try singularly or in combination with other things. Be resourceful, you are going to be your own best advocate for care and treatment once you find a doctor you are comfortable with. The sooner you find that doctor, the sooner a treatment plan can be put together. And, you may also need a PM doctor. This isn't an easy journey and I am sorry it is one you have to take. Do know that you have support here and please keep us posted so that we know best how to give you that support.
I wish you the very best and hope you find a doctor whom you feel you can work with and who understands you, your condition and your pain...
Blessings for peace, calm and tranquility in your world and gentle hugs, too.
My first suggestion would to be to change doctors. We have another member that also has MS & suffers terribly She see a neurologist for her condition. Her name is ukliz. You can type in her name in the friends & friend her. I will try to alert her to your question & see if she is up to answering you. She is currently in the hospital, but I know she can be of great help to you. I wish you the best...
Hi, Sorry to hear your in so much pain, I can relate to what your going through. In fact the pain got so bad for me I was admitted into the hospital Yesterday. As to what advice I could give you for your pain, is have you tried Lyrica, Gabapentin. Have you tried heat, ice and the only other thing I can think of is the tens machine. Hope you feel better soon, Liz.
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